    [Senate Hearing 105-373]
    [From the U.S. Government Publishing Office]

                                                           S. Hrg. 105-373

      DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
              RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1998

    =======================================================================

                                    HEARINGS

                                    before a

                              SUBCOMMITTEE OF THE

                COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE

                           ONE HUNDRED FIFTH CONGRESS

                                 FIRST SESSION

                                       on

                               H.R. 2264/S. 1061

     AN ACT MAKING APPROPRIATIONS FOR THE DEPARTMENTS OF LABOR, HEALTH AND
      HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES, FOR THE FISCAL
             YEAR ENDING SEPTEMBER 30, 1998, AND FOR OTHER PURPOSES

                                   __________

                      Corporation for Public Broadcasting
                            Department of Education
                    Department of Health and Human Services
                   Federal Mediation and Conciliation Service
                           Nondepartmental witnesses
                      Physician Payment Review Commission
                   Prospective Payment Assessment Commission
                       United States Institute of Peace

                                   __________

             Printed for the use of the Committee on Appropriations

     Available via the World Wide Web: http://www.access.gpo.gov/congress/senate

                         U.S. GOVERNMENT PRINTING OFFICE
     39-860 cc                  WASHINGTON : 1998
    ___________________________________________________________________________
                For sale by the U.S. Government Printing Office
    Superintendent of Documents, Congressional Sales Office, Washington, DC 20402
                               ISBN 0-16-056239-2

                          COMMITTEE ON APPROPRIATIONS

                         TED STEVENS, Alaska, Chairman
    THAD COCHRAN, Mississippi            ROBERT C. BYRD, West Virginia
    ARLEN SPECTER, Pennsylvania          DANIEL K. INOUYE, Hawaii
    PETE V. DOMENICI, New Mexico         ERNEST F. HOLLINGS, South Carolina
    CHRISTOPHER S. BOND, Missouri        PATRICK J. LEAHY, Vermont
    SLADE GORTON, Washington             DALE BUMPERS, Arkansas
    MITCH McCONNELL, Kentucky            FRANK R. LAUTENBERG, New Jersey
    CONRAD BURNS, Montana                TOM HARKIN, Iowa
    RICHARD C. SHELBY, Alabama           BARBARA A. MIKULSKI, Maryland
    JUDD GREGG, New Hampshire            HARRY REID, Nevada
    ROBERT F. BENNETT, Utah              HERB KOHL, Wisconsin
    BEN NIGHTHORSE CAMPBELL, Colorado    PATTY MURRAY, Washington
    LARRY CRAIG, Idaho                   BYRON DORGAN, North Dakota
    LAUCH FAIRCLOTH, North Carolina      BARBARA BOXER, California
    KAY BAILEY HUTCHISON, Texas
                       Steven J. Cortese, Staff Director
                     Lisa Sutherland, Deputy Staff Director
                   James H. English, Minority Staff Director
                                     ------

     Subcommittee on Departments of Labor, Health and Human Services, and
                        Education, and Related Agencies

                     ARLEN SPECTER, Pennsylvania, Chairman
    THAD COCHRAN, Mississippi            TOM HARKIN, Iowa
    SLADE GORTON, Washington             ERNEST F. HOLLINGS, South Carolina
    CHRISTOPHER S. BOND, Missouri        DANIEL K. INOUYE, Hawaii
    JUDD GREGG, New Hampshire            DALE BUMPERS, Arkansas
    LAUCH FAIRCLOTH, North Carolina      HARRY REID, Nevada
    LARRY E. CRAIG, Idaho                HERB KOHL, Wisconsin
    KAY BAILEY HUTCHISON, Texas          PATTY MURRAY, Washington
    TED STEVENS, Alaska                  Robert C. Byrd, West Virginia
      (Ex officio)                         (Ex officio)
                          Majority Professional Staff
                      Craig A. Higgins and Bettilou Taylor

                          Minority Professional Staff
                                  Marsha Simon

                             Administrative Support
                                  Jim Sourwine

                                C O N T E N T S

                                  ----------

                             Tuesday, March 4, 1997

                                                                       Page
    Department of Health and Human Services: Office of the Secretary.     1

                           Wednesday, April 16, 1997

    Department of Education: Secretary of Education..................    85
    Nondepartmental witnesses........................................   147

                            Wednesday, June 11, 1997

    Department of Health and Human Services: National Institutes of
      Health.........................................................   165
    Nondepartmental witnesses........................................   229
    Material submitted subsequent to conclusion of the hearing.......   275

            Material Submitted Subsequent to Conclusion of Hearings

    Prospective Payment Assessment Commission........................   291
    Physician Payment Review Commission..............................   294
    United States Institute of Peace.................................   300
    Corporation for Public Broadcasting..............................   312
    Federal Mediation and Conciliation Service.......................   323
    Nondepartmental witnesses........................................   333

      DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
              RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1998

                                  ----------

                             TUESDAY, MARCH 4, 1997

                                           U.S. Senate,
               Subcommittee of the Committee on Appropriations,
                                                        Washington, DC.
        The subcommittee met at 10:01 a.m., in room SD-192, Dirksen
    Senate Office Building, Hon. Arlen Specter (chairman)
    presiding.
        Present: Senators Specter, Gregg, Faircloth, Hutchison,
    Stevens, Harkin, Bumpers, Kohl, and Murray.

                    DEPARTMENT OF HEALTH AND HUMAN SERVICES

                            Office of the Secretary

    STATEMENT OF HON. DONNA E. SHALALA, SECRETARY

                    opening remarks of senator arlen specter

        Senator Specter. Ladies and gentlemen, the hour of 10 a.m.,
    having arrived, we will begin the hearing of the Appropriations
    Subcommittee on Labor, Health and Human Services, and
    Education. This morning, we greet the distinguished Secretary
    of Health and Human Services, Hon. Donna Shalala.
        Welcome, Madam Secretary.
        The budget for the Department of Health and Human Services
    is an enormous one, amounting to some $200 billion in
    entitlements and discretionary programs, and included in that
    is a discretionary budget request of $31.7 billion, which is a
    virtual freeze on the funds from last year.
        The Department has an enormous number of vital programs in
    the health field, an evolving field with enormous changes, even
    before the introduction of the President's health care program
    in 1993. The health care field was seeing enormous changes with
    the President's program having been introduced and the analysis
    of that program, which ultimately did not result in legislation
    but has had profound changes, with the private sector
    responding in a variety of ways. With managed care programs and
    other efforts to try to contain costs we have seen tremendous
    changes in this field.
        The advent of managed care has brought a new array of
    concerns: the so-called gag rule, the so-called capitation
    response by Congress with legislation on drive-by deliveries,
    requiring that women stay at least 48 hours in the hospital,
    and now legislation to determine hospitalization coverage for
    mastectomies. There is a real area of concern that there may be
    micromanagement by the Congress.
        This subcommittee and others in the Congress are searching
    for ways to have a generalized approach to these issues so that
    the decisions will be made by doctors, as opposed to insurance
    companies, and certainly not by Congress.

                               prepared statement

        There is quite a long list of very important items to be
    covered in our hearings. So I will put my formal statement in
    the record, without objection, and we will turn at this time to
    our distinguished witness, the Secretary of Health and Human
    Services.
        [The statement follows:]

                     Prepared Statement of Senator Specter

        This morning the Subcommittee on Labor, Health and Human
    Services and Education convenes the first of several hearings
    on the fiscal year 1998 appropriations requests. I want to once
    again welcome Secretary Shalala to the subcommittee.
        Madam Secretary, your Department is charged with a
    formidable task: overseeing over $200 billion in entitlement
    and discretionary programs that Congress appropriates to your
    Department for meeting the Health and Human Service needs of
    our Nation's citizenry.
        No other Federal Department has more at stake in the
    balanced budget negotiations than yours. If the Congress and
    the President fail to reach agreement on entitlement reforms
    that stem the growth in spending for Medicaid and Medicare,
    these programs will soon consume virtually the entire Federal
    budget, leaving no room for funding medical research,
    preventive and primary health services and Head Start.
        This committee will be taking a careful look at your
    recommendations for fiscal year 1998. Your Department's budget
    request for discretionary spending for this coming fiscal year
    totals $31.7 billion, virtually a freeze in spending. I am sure
    you agree that something as critical as the health of our
    citizens deserves no less than the most reasoned review. In the
    year ahead, this Congress is expected to take action to assure:
        Medicare is financially sound;
        Poor children have health coverage;
        Health maintenance organizations provide quality care to
    beneficiaries;
        Women have access to regular mammography screening;
        Continued progress in fighting disease through prevention
    and medical research; and
        A comprehensive review of the implications of genetic
    research.
        We have an extremely tough job ahead of us, Madam
    Secretary. I look forward to working with you in the coming
    months to craft an appropriations bill that maintains the
    commitment to balancing the budget while preserving funding for
    high priority health and human service programs. This will
    necessitate each Federal agency within this subcommittee's
    jurisdiction sharing in spending reductions through identifying
    further efficiencies and savings.

                  summary statement of secretary donna shalala

        Secretary Shalala. Thank you very much, Mr. Chairman. I
    apologize for changing the time of the hearing.
        I am pleased to appear before you today to discuss the
    President's 1998 budget for the Department of Health and Human
    Services.
        Theodore Roosevelt once said nine-tenths of wisdom consists
    of being wise on time. This country remains the oldest and the
    finest democracy, not because we always agree but because we
    know when it is time to agree. These are the moments that have
    always defined generations.
        Mr. Chairman, we have reached one of those moments. Leaders
    on both sides of the aisle agree that we must balance the
    budget. The question is how.
        At a time when our population is rapidly aging and our
    health delivery system is rapidly changing, a time when
    advances in technology and medical research offer new hope and
    new ethical dilemmas, how can we put our budget in the black
    and meet our health care challenges for the 21st century?
        The President's plan will allow us to do just that. It puts
    us on a straight path to balance the budget by the year 2002,
    and our Department is playing a leading role in that effort.
        Overall, the President's 1998 budget for the Department
    totals $376 billion in outlays, of which $34.7 billion is
    discretionary. Make no mistake about it--we believe this is a
    smart budget for a new century.
        It acknowledges that we live in a time of scarce Federal
    resources and that government cannot do it all. But it makes it
    clear that when we target our resources responsibly and
    innovatively, when we team up with our private and public
    partners, and when we act as tough, savvy managers, the Federal
    Government can help lead the way to create a stronger and a
    healthier Nation, a Nation capable of meeting challenges both
    old and new.

                          medicare and medical changes

        Our first challenge is that we reserve our Medicare and
    Medicaid lifelines by modernizing, reforming and strengthening
    them. The President's plan would reduce projected Medicare
    spending by a net $100 billion over 5 years and guarantee the
    solvency of the part A trust fund until the year 2007, a full
    10 years.
        The independent HCFA actuary has written a letter
    confirming these numbers and I will submit it for the record.
        [The information follows:]
                                   Memorandum
               Department of Health and Human Services,
                          Health Care Financing Administration,
                                      Washington, DC, January 21, 1997.
    To: Administrator, HCFA.
    From: Chief Actuary, HCFA.
    Subject: Estimated Year of Exhaustion for the HI Trust Fund under the
            Medicare Legislative Proposals in the President's 1998 Budget.
        This memorandum responds to your request for the estimated year of
    exhaustion for the Hospital Insurance trust fund under the Medicare
    legislative proposals developed for the President' 1998 Budget. Based
    on the intermediate set of assumptions in the 1996 Trustees Report, we
    estimate that the assets of the HI trust fund would be depleted early
    in calendar year 2007 under the Budget proposals.
        In the absence of corrective legislation, trust fund depletion
    would occur early in calendar year 2001 based on the intermediate
    assumptions. Thus, the Budget proposals would postpone the year of
    exhaustion by about 6 years.
        The financial operations of the HI trust fund will depend heavily
    on future economic and demographic trends. For this reason, the
    estimated year of depletion under the budget proposals is very
    sensitive to the underlying assumptions. In particular, under adverse
    conditions such as those assumed by the Trustees in their ``high cost''
    assumptions. Asset depletion could occur significantly earlier than the
    intermediate estimate. Conversely, favorable trends would delay the
    year of exhaustion. The intermediate assumptions represent a reasonable
    basis for planning.
        The estimated year of exhaustion is only one of a number of
    measures and tests used to evaluate the financial status of the HI
    trust fund. If you would like additional information on the estimated
    impact of the Medicare proposals in the President's 1998 Budget, we
    would be happy to provide it.
                                              Richard S. Foster, F.S.A.

                              modernizing medicare

        Secretary Shalala. We are able to achieve these savings
    with real reforms, not with gimmicks, and without imposing new
    financial burdens on older Americans and people with
    disabilities. How? We do this by modernizing Medicare so that
    it fits the needs of older and disabled Americans both today
    and tomorrow--which is why we are expanding choices among
    private plans; which is why we are making sure that government
    is a more prudent purchaser of health care services; which is
    why we are tightening reimbursement rules, moving toward a new
    payment system and investing in prevention benefits like
    mammograms, vaccines, and colon screening, benefits that we
    know prevent illness and save lives.
        Medicaid, too, needs a new look, but not a new soul. We
    keep Medicaid's historic promise of health care for our most
    vulnerable Americans. At the same time, the President's budget
    includes net Medicaid savings of $9 billion over 5 years.
    Overall, we are saving $22 billion over 5 years.
        We are able to propose less savings than last year in part
    because of the great progress we have already made in reducing
    the Medicaid baseline, progress that could not have happened
    without strong management, without new legislation, and without
    increased flexibility, progress that must continue. This is why
    we are giving the States even more flexibility with Medicaid.
        We are throwing away mountains of redtape for them and
    regulations by eliminating managed care waivers. We are also
    repealing the Boren amendment so States have more freedom to
    set provider payment rates, and we are dropping archaic payment
    rules. We are also eliminating regulations that tie States'
    hands on staffing and other matters.

                             children's health care

        Our second goal is to lift up the lives of our children,
    and here the President's plan makes a firm, passionate
    commitment by, first and foremost, tackling one of this
    country's most pressing health care challenges, a challenge I
    know that members on both sides of the aisle want to meet.
        Today there are more than 10 million children, 1 in 7,
    without health insurance. Most of these children are in
    families where parents work hard and play by the rules. This
    must end.
        Our administration proposal is designed to cut the number
    of uninsured children by millions over the next 4 years. Let me
    outline how we are going to do it. And, Mr. Chairman, I am well
    aware that you have a significant recommendation in this area.
        First, we will offer a hand-up to workers between jobs who
    need health insurance for their families while they get back on
    their feet. Our budget dedicates $1.7 billion this year to help
    these families get up to 6 months of health care coverage. That
    will help to insure 700,000 children.
        Second, we are proposing to spend $750 million a year for a
    new partnership with the States so that we can insure children
    who fall through the cracks because their families earn too
    much to be eligible for Medicaid but not enough to afford
    private insurance.
        Third, we are taking important steps to expand Medicaid
    coverage to reach more children through legislation the
    Congress has already passed.
        We allow States to provide 1 full year of continuous
    Medicaid coverage for the 1.2 million children who qualify each
    year.
        Mr. Chairman, this is an interesting proposal because what
    happens now is a child could be enrolled in Medicaid but one of
    their parents gets a job and moves above the Medicaid line.
    They have to be dropped by that HMO after the HMO has gone
    through the process of enrolling them.
        Our proposal keeps that child in the Medicaid program and
    in that HMO for 1 full year. We will add 1 million adolescents
    to Medicaid by the year 2000. That is the regular legislation
    that has been introduced.
        Finally, working with States and with health care
    providers, we put together an extraordinary public/private
    partnership to help find the 3 million children who are
    eligible for Medicaid but are not currently enrolled. We expect
    to enroll 1.6 million by the year 2000.

                                 welfare reform

        One of the President's highest priorities this year will be
    to move forward on the promise of welfare reform, changing our
    welfare reform program to a jobs program so that everyone who
    can work has the opportunity to work. But real welfare reform
    does not mean punishing people who cannot work. This is why our
    budget includes $5.2 billion to restore Medicaid benefits to
    disabled children and to legal immigrants who are either
    children or disabled adults--people who cannot be expected to
    work.
        These are important steps, steps we can take together.
        But this budget commitment to children and families does
    not end there. If you look at the increase in our discretionary
    budget, what you will see is an intense focus on our children,
    a focus on the early foundations they need to get the right
    start in life and the guidance they need, as adolescents, to
    make the right choice with their lives.

                                   head start

        You cannot live in Washington for more than a day without
    noticing that people tend to disagree about everything. But
    people do agree that the early years of a child's life are
    critical to his or her success in school and beyond, and to
    enrich those early years they do agree that Head Start works.
    It is part of the solution.
        Our goal is to expand Head Start to reach more of the
    children who need it but do not get it now. To do this, we
    propose a $324 million increase in Head Start.

                            new adoption initiatives

        Today we have almost 500,000 children in foster care and
    100,000 of them have no chance of returning back home. That is
    100,000 children who want what every child deserves--a home,
    security, and love.
        The President has issued our Nation a difficult but
    critical challenge. By the year 2002, we must double the number
    of children in foster care who are adopted or permanently
    placed each year. To reach this goal, the budget includes $21
    million for a new adoption initiative, to help States remove
    barriers that keep kids from finding loving, permanent homes.
        Too often in the past, policymakers grouped children of all
    ages together. In this budget, we take a much more
    sophisticated approach by tackling the unique landmines that
    help keep many of our adolescents from making smart choices
    with the only lives they will ever have.

                              teenage pregnancies

        After years of increases, there is some indication that
    teenage birth rates are inching downward, but not nearly
    enough. Each year, 200,000 teenagers, 17 and younger, have
    children. That hurts these children, it hurts their parents,
    and it hurts our entire Nation. That is why, as part of the new
    welfare law, we are implementing a new $50 million initiative
    to send our children one clear and consistent message, that
    they must abstain from sex.

                                teenage drug use

        There is a lot of talk lately about rising drug use rates
    among teens. But when you peel away the rhetoric and take a
    cold, hard look at the hard facts, what you see is our teenage
    drug problem in this country is, for the most part, a marijuana
    problem. The fact is that we have too many parents who do not
    feel comfortable talking to their kids about marijuana and
    sending them clear no-use messages.
        We have a generation of children who are using marijuana
    earlier and earlier and are more and more likely to be armed
    with the dangerous misconception that it will do them no harm.
        As part of the President's overall drug strategy, our 1998
    budget makes a $98 million commitment to fighting these
    dangerous trends--by countering pro-use messages, especially
    among 9- to 14-year-olds; by leveraging State resources; by
    gathering State by State data on substance abuse so that our
    country's Governors will know where they are succeeding and
    where they are not; and by dedicating an additional $30 million
    to expanding research on drug treatment and prevention.

                              teenage tobacco use

        There are a lot of different perspectives on the drug issue
    and certainly there are a lot of different perspectives on the
    issue of tobacco. But there is one thing we can agree on:
    children in this country should never smoke.
        Every year, tobacco related illnesses claim the lives of
    400,000 Americans, the vast majority of whom began smoking
    while they were teenagers, before their 18th birthday. That is
    why the President stood up to the special interests and
    proposed the boldest initiative ever to kick Joe Campbell and
    the Marlboro man out of our children's lives. We made that
    promise to our children and to their parents. In this budget we
    include $34 million to implement the regulation and to make
    that promise a reality.
        We are also requesting $36 million for CDC and $22 million
    for NIH, to help States prevent cancer and encourage Americans,
    particularly kids, to put down their cigarettes and pick up
    their health.
        The fact is that, when we work to cut teen smoking by one-
    half over 7 years, we are focusing on a huge public health
    challenge that, if successful, could save thousands of lives
    and dollars.

                              public health agenda

        That is our approach in this budget as we move ahead to
    meet our third challenge, to build a public health agenda for
    the 21st century.
        Parents should not have to worry that the food or juice
    that they give their children will make them sick. They
    shouldn't have to worry that their families or communities will
    fall victim to deadly outbreaks of infectious diseases. But
    today too many do.
        The CDC estimates that there are as many as 33 million
    cases of food-borne illnesses each year in this country and up
    to 9,000 deaths because of them. And emerging and reemerging
    infectious diseases, like ebola, are increasingly crossing
    continents and oceans to threaten all of us.
        In both of these areas, we know that it pays to be smart on
    the front end to find innovative ways to prevent these
    tragedies instead of just responding to them after they have
    occurred. This is why the President has proposed a very
    sophisticated $43 million early warning system so that we can
    stop food-borne illnesses before they stop us. This is why our
    budget increases funding by $15 million to improve training and
    research and the ability of States to prevent and respond to
    deadly outbreaks of infectious diseases.

                                medical research

        Another cornerstone of our public health agenda is and
    always will be medical research. To make certain that the
    United States remains preeminent in research our administration
    proposes $13.1 billion for the NIH as well as the second year
    of funding for NIH's new cutting edge clinical research center.
        Because of the brilliant work that is being done at the
    National Institutes of Health, we have not only made important
    scientific breakthroughs, we have also learned that basic
    science can and should inform the choices we make about disease
    prevention and treatment. This lesson is important in the
    debate over mammography screening for women from age 40 to 49.
        Last week, on February 25, the outside experts who make up
    the National Cancer Institute's Advisory Board began a
    discussion of the issues surrounding mammography screening. The
    advisory board, recognizing the importance and complexity of
    the issues, decided to form a working group to develop clear
    recommendations for the National Cancer Institute, including
    the messages that NCI should communicate to women in this age
    bracket about the benefits of mammography.
        That board will report to the Director of NCI within 2
    months.
        Here, as in other areas, good science should prevail. Past
    NIH scientific research has already led to remarkable
    breakthroughs in the treatment and prevention of HIV AIDS. And
    now in this budget, NIH proposes to invest $1.5 billion in
    additional research, including a substantial increase in
    funding for AIDS vaccine research, so we can use the light of
    science to finally reach the end of this dark tunnel. But until
    we do, our first priority must be prevention.
        Our budget increases our prevention activities in the CDC
    by $20 million to help prevent HIV among drug users, one of the
    groups at highest risk. And we continue our strong commitment
    to Ryan White activities by proposing $1 billion, $40 million
    more than last year, to empower those communities hardest hit
    to fight back.

                                  tough budget

        Preserving and modernizing Medicare and Medicaid, investing
    in the lives of children and families, creating a strong public
    health agenda for the 21st century, we have been able to make
    these commitments, Mr. Chairman, because of the strong
    management we have brought to the Department. We have reduced
    FTE's by almost 7,600 since 1993. We have cut bureaucracy, we
    have consolidated services, we have increased flexibility. That
    is what the American people want and deserve.

                               prepared statement

        Barbara Jordan once said: ``What the people want is very
    simple. They want an America that is as good as its promise.''
    An America as good as its promise--that is the future we have
    tried to create with this budget, a budget that makes tough
    choices, a budget that shows tough management, a budget that
    cuts costs and invests in lives, especially in the lives of
    children and adolescents. That is the American future that all
    of us can create if we seize this great opportunity as we have
    done in the past and move forward together.
        Once again, Mr. Chairman, I want to thank you for giving me
    this opportunity to testify and I would be happy to answer any
    questions you may have.
        Senator Specter. Thank you very much, Madam Secretary.
        [The statement follows:]
                  Prepared Statement of Hon. Donna E. Shalala
        Mr. Chairman and Distinguished Members of the Subcommittee: I am
    pleased to appear before you today to discuss the President's 1998
    budget for the Department of Health and Human Services.
        As we move toward a new century, our Nation faces significant
    health and human service challenges. Advances in biomedical research
    and medical technologies, changing demographics, and transformations in
    the structure and delivery of health care and social services all
    present us with new opportunities and new demands. The President's
    fiscal year 1998 budget for the Department of Health and Human Services
    (HHS) ensures that our Nation's health and social services programs
    will have the flexibility to address these changes.
        Our budget takes several critical steps toward creating a stronger
    and healthier nation:
        It puts us on a path to a balanced budget by 2002;
        It preserves Medicare and Medicaid by reforming, strengthening, and
    modernizing both programs;
        It helps provide health insurance to growing numbers of American
    families, especially children who do not have it;
        It helps families raise strong and healthy children by
    strengthening our investment in Head Start, teen pregnancy prevention
    and abstinence education; increasing opportunities for adoption; and
    bolstering our efforts to reduce tobacco and drug abuse among youth;
        It provides assistance and support to States as they assume new
    responsibilities under welfare reform and to families as they make the
    transition to work;
        It creates a strong public health agenda for the next century by
    sustaining biomedical research at the National Institutes of Health,
    developing a new food safety initiative, combating infectious diseases
    and providing life-extending drug therapies to people with AIDS; and
        It emphasizes tough management strategies that cut costs, ensure
    program integrity, create technological opportunities, promote
    effectiveness, respond to our customers and empower our partners.
        The President's fiscal year 1998 budget proposes a balanced budget
    by fiscal year 2002 through a combination of program savings,
    responsible reforms and strong management. The Department of Health and
    Human Services plays a major role in this balanced budget effort. The
    President's fiscal year 1998 budget for the Department of Health and
    Human Services totals $376 billion in outlays of which $34.7 billion is
    discretionary spending. Of the total amount requested, $223 billion in
    spending will be for programs that fall under this Subcommittee. This
    amount includes $31.7 billion in discretionary spending, an increase of
    1.5 percent over fiscal year 1997.
               preserving and strengthening medicare and medicaid
    Medicare
        The President's Medicare plan preserves and modernizes the program,
    reducing projected spending by a net $100 billion over five years while
    guaranteeing the solvency of the Part A Hospital Insurance trust fund
    until 2007. We are reforming Medicare to make it more efficient and
    responsive to beneficiary needs to make it a more prudent purchaser, to
    give seniors more choices among private health plans, to cut the growth
    of provider payments, and to hold the Part B premium to 25 percent of
    program costs.
        In fiscal year 1998, HHS will continue to crack down on Medicare
    and Medicaid fraud and abuse through implementation of the Medicare
    integrity and anti-fraud and abuse programs that are authorized by the
    Health Insurance Portability and Accountability Act of 1996. Building
    on the successes of the HHS pilot project, Operation Restore Trust, HHS
    and the other Federal, State, and local partners will expand anti-fraud
    efforts to all 50 states.
    Medicaid
        The President's plan for Medicaid reforms the program but preserves
    the guarantee of health and long-term care coverage for the most
    vulnerable Americans--more than 37.5 million children, pregnant women,
    people with disabilities, and the elderly. The President's legislative
    proposals in Medicaid will achieve a net savings of $9 billion over the
    five years from 1998 through 2002. This total is comprised of both
    spending and savings proposals that improve and strengthen the Medicaid
    program, while more appropriately targeting spending for our most
    vulnerable populations.
        Recognizing that growth in Medicaid spending has declined
    significantly over the past two years, this budget seeks to maintain
    these lower spending levels in the out- years when spending growth is
    projected to rise more rapidly again. The President's Medicaid savings
    are achieved through the establishment of a per-capita cap and through
    the reduction and re-targeting of DSH spending, for a total of $22
    billion over five years. The budget also makes a number of improvements
    to the Medicaid program, including changes to last year's welfare
    reform law, costing $13 billion over the same period.
        The major spending initiatives include the children's health
    initiative and welfare reform related proposals. The plan also helps
    States meet the most pressing needs, while giving them unprecedented
    flexibility to administer their programs more efficiently. Finally, the
    plan retains current nursing home quality standards and continues to
    protect the spouses of nursing home residents from impoverishment.
      maintaining and expanding health care coverage for working families
        One of the best signs of a healthier tomorrow was passage of the
    Health Insurance Portability and Accountability Act of 1996 which
    addressed some of the problems workers face in getting, and holding
    onto, affordable health insurance. We must now take the next step to
    help the growing numbers of American families who lack health insurance
    coverage. And that is exactly what this budget proposes to do.
        An estimated 10 million children in America today do not have
    health insurance. The President is proposing these steps to help
    address this problem and reach the goal of reducing the number of
    uninsured children by up to 5 million by the end of fiscal year 2000.
        First, the budget proposes $750 million in annual grants to States
    to build on their recent successes in working with insurers, providers,
    employers, schools, and others to develop innovative ways to provide
    health insurance coverage to children who have neither Medicaid nor
    employer-sponsored insurance.
        Second, the budget provides funds to allow States the option to
    extend one year of continuous Medicaid coverage to children, thus
    increasing continuity and security for children and families and
    reducing administrative burdens on States, families, and health care
    plans which now have to determine eligibility on a monthly basis.
        Third, the budget includes a $1.7 billion initiative to help about
    700,000 children in the families of temporarily unemployed workers
    maintain health coverage between jobs. This program of grants to states
    will be available to recipients with incomes below a certain level, who
    had employer-based coverage in their prior jobs. States will have
    substantial flexibility to administer the demonstration program.
        Finally, we will work with the Nation's Governors to develop new
    ways to reach out to the 3 million children who are currently eligible
    for Medicaid but are not presently enrolled. In addition, under current
    law, an estimated 250,000 14-year-olds will become eligible for
    Medicaid in 1998.
        As a part of the President's health legislation package, our budget
    includes $25 million in grants to States to establish voluntary health
    insurance purchasing cooperatives to take advantage of economies of
    scale to which small firms normally do not have access in purchasing
    health insurance.
             building strong foundations for families and children
        The best gifts we can give our children are strong families, safe
    communities, and good health. Strong foundations are important for
    every child's future. Both research and the experiences of parents and
    caregivers tell us that a child's environment during the early years is
    especially critical to his or her ability to succeed in school and
    later in life.
        In addition to expanding health care coverage for children, this
    budget includes many other special initiatives to help our children and
    families. It is sound fiscal policy to invest in our nation's children;
    the pay off obviously can be substantial. For this reason, the budget
    proposes a set of strategic investments.
        Head Start.--Studies of children enrolled in Head Start and other
    similar programs continue to show that the Head Start experience has a
    positive impact on school readiness, increases children's cognitive
    skills, boosts self-esteem and achievement motivation, and improves
    school social behavior. Head Start has also been shown to help parents
    improve their parenting skills, increase participation in their
    children's school activities and, in many cases, helps parents on the
    road to self- sufficiency. In short, Head Start works and needs to be
    expanded to reach more Head Start-eligible children in families not
    currently served by the program. The budget includes $4.3 billion, $324
    million more than in 1997, to ensure that Head Start stays on track to
    serve 1 million children by 2002. The additional funds will allow Head
    Start to serve an additional 36,000 new children and their families,
    bringing total Head Start enrollment to an estimated 836,000.
        Adoption Initiative.--Each year, State child welfare agencies
    secure homes for less than one-third of the children for whom the goal
    is adoption or another permanent placement. These children wait an
    average of three years to be placed in permanent homes. President
    Clinton has challenged States and Federal agencies to at least double,
    by the year 2002, the number of children in foster care who are adopted
    or permanently placed each year. HHS will lead the effort to identify
    barriers to permanent placement, set numerical targets, reward
    successful performance, and raise public awareness. The fiscal year
    1998 budget includes $21 million for an adoption initiative. Funds will
    be used to provide training and enhanced technical assistance to
    States; support grants to States to assist them in removing barriers to
    adoption or permanent placement; engage business, church and community
    leaders in this initiative and develop and lead a public awareness
    effort to include public service announcements, print material and
    increase use of Internet to promote adoption. Our budget also proposes
    paying $108 million between fiscal year 1999-2000 in incentives to
    States for increases in adoptions over the previous year which will be
    offset by corresponding reductions in foster care costs.
        Tobacco.--Every year, tobacco-related cancer, respiratory illness,
    heart disease, and other health problems take the lives of 400,000
    Americans--the vast majority of whom began smoking before their 18th
    birthday. Consequently, in August 1996, the Administration approved the
    boldest proposal ever made to kick Joe Camel and the Marlboro Man out
    of our children's lives. The goal of this initiative is to cut tobacco
    use among our young people by half over 7 years by reducing the ready
    access that teenagers have to tobacco products and by lessening the
    pervasive appeal that these products have for potential underage users.
    Our budget includes $34 million to implement the regulation. The budget
    also provides $36 million for CDC and $22 million for NIH for financial
    and technical support to States for tobacco control and cancer
    prevention activities. In addition, the Substance Abuse and Mental
    Health Services Administration (SAMHSA) is working with States to help
    them comply with the 1996 Synar regulation requiring that they reduce
    the availability of tobacco products to underaged youths.
        Reducing Substance Abuse Among Youth.--After years of steady
    decline, marijuana use is rapidly increasing among American youth. As
    much a cause for concern is the fact that adolescents increasingly feel
    there is little or no risk to themselves or others in their abusing
    drugs. To attempt to reverse these trends, the Department is increasing
    the resources dedicated to preventing marijuana and other substance
    abuse. The fiscal year 1998 budget specifies $98 million for a SAMHSA
    youth substance abuse prevention initiative which will allow HHS to
    mobilize and leverage Federal and State resources, raise awareness and
    counter pro-use messages, and measure outcomes. Approximately $63
    million will be dedicated to State Incentive Grants.
        These grants will require Governors to develop comprehensive State-
    wide strategies for reducing youth substance abuse. In designing their
    plans, States may propose their own approaches but will be offered a
    menu of effective substance abuse prevention strategies and programs
    that are based on scientific research. SAMHSA will focus public
    education efforts on reaching youth and their caregivers by integrating
    and expanding its Girl Power! and Reality Check anti-drug use
    campaigns. To measure outcomes, approximately $28 million will be used
    to expand the National Household Survey on Drug Abuse to capture state-
    level data. The Household Survey now provides data for making national
    estimates on the prevalence of substance abuse in the population age 12
    years and older as well as information on behavior, attitudes, and
    household characteristics. The expansion will allow the Department to
    make state estimates of substance abuse for youth between 12 and 17 and
    for young adults, benefiting those who are designing state substance
    abuse prevention and treatment activities. The Administration also
    calls on Congress to enact SAMHSA's Performance Partnership proposal,
    which would give States more flexibility to design and coordinate their
    anti-abuse and mental health programs and target resources to community
    priorities.
        Preventing Teen Pregnancy.--Teen pregnancy rates are going down,
    but more needs to be done. Each year, about 200,000 teenagers who are
    17 or younger have children. Their babies are often low birth weight
    and are at high risk for infant mortality. They are also likely to be
    poor--about 80 percent of the children born to unmarried teenagers who
    dropped out of high school are poor. In contrast, just 8 percent of
    children born to married high school graduates aged 20 or older are
    poor. The fiscal year 1998 budget includes $14.2 million for the
    Adolescent Family Life program, an abstinence-based education
    initiative which continues to build on the Administration's ongoing
    efforts to assure that communities are working to prevent out-of-
    wedlock teen pregnancies. This budget also includes $13.7 million for
    CDC's program for the prevention of teen pregnancy. In addition, the
    new welfare reform law signed by President Clinton on August 22, 1996,
    provides $50 million a year in new funding for the Health Resources and
    Services Administration (HRSA) to support State abstinence education
    activities, beginning in fiscal year 1998.
                       public health for the 21st century
        Investments in public health can yield substantial returns--fewer
    premature deaths, fewer and less costly illnesses, and healthier, more
    productive lives. The fiscal year 1998 budget invests in biomedical
    research and in public health initiatives that show great promise for
    improving critical health problems while controlling future costs.
        Biomedical, Behavioral and Health Services Research.--The budget
    continues the Administration's longstanding commitment to biomedical
    research, which advances the health and well-being of all Americans.
    For the National Institutes of Health (NIH), it proposes $13.1 billion
    for biomedical research that would lay the foundation for future
    innovations that improve health and prevent disease. The budget
    includes $223 million to emphasize research in six areas NIH has
    identified as showing the most promise for addressing public health
    needs and yielding medical advances, including research on the biology
    of brain disorders; new approaches to pathogenesis; new preventative
    strategies against disease; genetics of medicine; advanced
    instrumentation and computers in medicine and research; and new avenues
    for therapeutics development. In addition, the request funds research
    on HIV/AIDS, breast cancer, drug abuse, spinal cord injury and
    regeneration, as well as many other diseases and disorders that affect
    the health, productivity, and quality of life of all Americans.
        Of particular interest to members of this Subcommittee is the
    question of the advisability of routine mammography screenings for
    women between the ages of 40 and 49. On February 25, the National
    Cancer Advisory Board began a discussion of the issues surrounding
    mammography screening for women. The advisory board, recognizing the
    importance and complexity of this issue, decided to form a working
    group to develop clear recommendations for the National Cancer
    Institute, including the messages that NCI should communicate to women.
    The Board intends to complete the process within two months.
        The budget request also includes the second year of funding for a
    new Clinical Research Center, which will give NIH a state-of-the-art
    research facility in which researchers can continue to bring the latest
    biomedical research discoveries directly to patients' bedsides.
        In just the past year, NIH-sponsored research has produced many
    major advances, such as locating the first major gene that predisposes
    men to prostate cancer; pinpointing the location of the gene that
    researchers believe is responsible for familial Parkinson's disease;
    and unveiling a map which identifies the locations of over 16,000 genes
    in human DNA, about one-fifth of the estimated 80,000 genes packaged
    within the human chromosomes. This will give researchers a ready list
    of ``candidates'' for genes involved in human diseases.
        Of particular note is an increase of $30 million for NIH's National
    Institute on Drug Abuse which is part of the Administration's cross-
    cutting commitment to combat drug abuse. The increased funding will
    further the development of a medication for the treatment of cocaine
    addiction.
        The budget includes an initiative devoted to improving health care
    quality. The Agency for Health Care Policy and Research (AHCPR) has
    requested $5 million on the Quality and Cost Effectiveness Initiative
    to narrow the gap between what we know and what we do to improve health
    care. The initiative will focus on developing knowledge and strategies
    to improve the quality of clinical care. Research on quality and cost
    effectiveness also plays a crucial role in the continuing effort to
    decrease expenditures for the Medicare program, while providing quality
    health care.
        Food Safety.--In recent years, new and serious food safety problems
    have occurred with increasing frequency, including illness outbreaks
    caused by food-borne pathogens such as E. coli, Salmonella,
    enteritidis, Vibrio vulnificus, and Cyclospora. The Centers for Disease
    Control and Prevention (CDC) has estimated that each year as many as 33
    million cases of food-borne illnesses in the United States result in up
    to 9,000 deaths. To respond effectively to these food safety issues,
    the President has proposed a $43 million food safety initiative,
    including $34 million for CDC and FDA to strengthen surveillance
    systems for food-borne illnesses nation-wide, and to improve Federal-
    State coordination when food-borne disease breaks out. The budget would
    also further support a modernized system of food safety inspection in
    the seafood industry that quickly identifies potential food safety
    hazards in the production and processing of such food. In addition, the
    U.S. Department of Agriculture is a partner in this initiative, with an
    increase of $9 million requested in fiscal year 1998.
        Infectious Disease.--Recent outbreaks of various infectious
    diseases have shown that emerging and re-emerging infectious diseases
    are an important potential threat to public health. Preventing
    infectious diseases is far less costly, in human suffering and economic
    terms, than reacting with expensive treatment and containment measures
    once public health emergencies occur. To address this need, the budget
    includes $59 million, $15 million more than in 1997, for CDC's efforts
    to address and prevent emerging infectious disease. Funds will support
    training and applied research, and strengthen significantly the States'
    disease surveillance capability. The budget also includes $88 million
    (which is $5 million more than in fiscal year 1997); for NIH's efforts
    to expand research on new and resurgent infectious diseases as well as
    the development of vaccines. Funds will support basic and applied
    research on infectious diseases to facilitate the detection and control
    of infectious agents.
        HIV Treatment and Prevention.--In 1996, the Ryan White CARE Act was
    reauthorized with strong bipartisan support. The budget proposes over
    $1 billion for HRSA's Ryan White activities, $40 million more than in
    1997. This will help our hardest hit cities, States, and local clinics
    provide medical and support services to individuals with HIV/AIDS.
    Under this Administration, funding for Ryan White grants has risen by
    158 percent. The 1998 budget would fund grants to cities and States to
    help finance medical and support services for individuals infected with
    HIV; to community-based clinics to provide HIV early intervention
    services; to pediatric AIDS and HIV dental activities; and to HIV
    education and training programs for health care providers. The fiscal
    year 1998 Ryan White request includes $167 million specifically for the
    AIDS drug assistance programs. In an effort to give states the
    flexibility to provide a combination of primary AIDS care services--
    AIDS drugs, insurance continuation and other medical and support
    services--to best meet their own needs, the budget provides a $15
    million increase to the overall Title II state grant program.
        Finally, the budget proposes $634 million for the CDC's HIV
    prevention activities, $20 million more than in 1997, to help prevent
    HIV among injecting drug users, who are at great risk of HIV infection.
    While the outside experts on the NIH Consensus Conference recently
    recommended lifting the ban on the use of federal funds for clean
    needle exchange programs, the prevention activities funded by this
    budget do not include such programs. As the Department's report to
    Congress, dated February 18, indicated, clean needle exchange can be an
    effective component in community-based HIV prevention programs in
    communities that choose to include them. The science on this issue is
    evolving somewhat rapidly. And, as it does, NIH will continue to
    research effective programs that examine how to prevent HIV infection
    and decrease drug abuse.
                               strong management
        In keeping with the President's commitment to the American people
    to reinvent and reduce the size of Government, the Department has
    continued to streamline organizational structures and focus our efforts
    on reducing employment while preserving the resources necessary to
    carry out our missions. The Department as a whole ended fiscal year
    1996 at a comparable level of 57,629 FTE which is more than 1,600 FTE
    under the budget target for the year. Since 1993, the Department has
    reduced staffing levels by approximately 7,600 FTE, or 12 percent. As
    we struggle to meet balance budget targets, we will be looking for
    innovative ways of financing our streamlining plans for this and future
    years.
        The fiscal year 1998 budget request supports the continuation of
    our efforts to transform the Department into a high-performance,
    customer-focused organization. Our past efforts have led to better
    service to our customers, reduced bureaucracy and red tape, increased
    flexibility in the administration of our programs, and internal changes
    that help the Department work better and save taxpayer dollars.
                                   conclusion
        The fiscal year 1998 budget for the Department of Health and Human
    Services accomplishes four major goals.
        First, it makes a major contribution to the goal of a balanced
    budget through targeted reforms of our entitlement programs and by
    limiting discretionary program growth. It also contributes to this goal
    through continued effort to curb fraud, waste, and abuse in Medicare
    and Medicaid.
        Second, it preserves, protects, and expands our health insurance
    system. Medicare is protected and trust fund solvency is extended.
    Medicaid will be reformed and expanded to cover up to 3 million more
    children. Two new programs will also extend health insurance to
    unemployed workers, their families and uninsured children.
        Third, it provides much needed investments in programs--Head Start,
    teen pregnancy prevention, adoption programs, and tobacco and drug use
    control among our children--that help families raise their children.
        Fourth, it proposes a public health system for the 21st century
    that will improve the nation's health by expanding medical research to
    ensure the safety of our food supply and strengthening our ability to
    respond to new and emerging infectious diseases and AIDS.
        Thank you, Mr. Chairman, for the opportunity to present our budget
    to this Subcommittee. We look forward to working with this Subcommittee
    on our fiscal year 1998 budget requests. I will be happy to answer any
    questions you or Members of the Subcommittee may have.
                                     ______

        summary of budget requests for programs under this subcommittee
        Health Resources and Services Administration (HRSA).--The fiscal
    year 1998 budget request for HRSA is $3.3 billion. Over $1 billion is
    proposed for Ryan White activities, a $40 million, or 4 percent
    increase over fiscal year 1997. This will continue our commitment to
    improve the quality and availability of care for individuals and
    families with HIV and AIDS. The request for the Consolidated Health
    Centers cluster provides $810 million for grants to local health
    centers that serve vulnerable under-served populations, including
    migrant workers, homeless individuals, and residents of public housing.
    This funding level maintains our commitment to ensure that they receive
    quality health care. The HRSA budget supports funding of several
    programs with the sole mission of improving the health of women of
    childbearing age and their children. These programs include the
    Maternal and Child Health Block Grant ($681 million); and the Title X
    Family Planning program ($203 million). In addition, HRSA will fund a
    new $50 million mandatory abstinence education block grant to States
    which was authorized in the Welfare Reform Bill.
        Centers for Disease Control and Prevention (CDC).--The fiscal year
    1998 request for CDC totals $2.45 billion in program level, a net
    increase of $36 million over fiscal year 1997. Within this level, $25
    million will be targeted to improve infectious disease prevention and
    control; and $10 million will be used to help ensure, in partnership
    with other government agencies, the safety of the food supply. Also
    included in the request are increased resources of $20 million to
    target HIV prevention efforts toward injecting drug users, a growing
    segment of all new AIDS cases. The fiscal year 1998 budget also
    continues and enhances CDC's diabetes control program, with a requested
    increase of $10 million. With this initiative, CDC will fund diabetes
    control programs in all 50 States. CDC is requesting an increase of $15
    million to conduct multi-faceted tobacco control programs in 32 States
    and the District of Columbia to reduce the use of tobacco, especially
    among our nation's youth. An added $5 million is requested to begin to
    replicate model programs to conduct intensive chlamydia screenings
    across the country. Reducing chlamydia infections ultimately results in
    a much lower rate of reproductive health consequences including
    infertility of women.
        Finally, the elimination of most vaccine-preventable diseases
    remains a major priority of the CDC. With the funds requested, CDC will
    be able to support the same level of State purchases of vaccine, as
    well as improvements to the delivery system, as was done in fiscal year
    1997.
        National Institutes of Health (NIH).--The fiscal year 1998 request
    for NIH totals $13.1 billion, an increase of $337 million, or 2.6
    percent, over fiscal year 1997. Within this increase, $271 million is
    devoted to providing a 3.9-percent rate of growth in funding for
    investigator-initiated research project grants (RPGs), NIH's highest
    priority.
        These grants support new and promising ideas cutting across all
    areas of medical research. In fiscal year 1998, the NIH budget provides
    nearly $7.2 billion to support a record total of 26,679 RPGs, including
    7,112 new and competing RPGs. Overlapping with the RPG increase is the
    NIH request for an additional $223 million to emphasize research in six
    areas NIH has identified as showing the most promise for addressing
    public health needs and yielding medical advances, including research
    on the biology of brain disorders; new approaches to pathogenesis; new
    preventive strategies against disease; genetics of medicine; advanced
    instrumentation and computers in medicine and research; and new avenues
    for therapeutics development. Also included within the request is an
    additional $30 million specifically to expand research on drug abuse
    and drug treatment and prevention.
        The development of a medication for the treatment of cocaine
    addiction is the highest priority for fiscal year 1998 of the National
    Institute on Drug Abuse. The fiscal year 1998 budget continues to
    request all of NIH's AIDS-related funds--$1.5 billion--in a single
    account for the Office of AIDS Research (OAR), consistent with the
    provisions of the NIH Revitalization Act of 1993. The Director of OAR
    will transfer AIDS funds to the Institutes in accordance with the
    comprehensive plan for AIDS research developed by the OAR along with
    the Institutes. The Administration strongly supports a consolidated
    AIDS appropriation within NIH as a vital part of ensuring a coordinated
    and flexible response to the AIDS epidemic. In addition, $90 million in
    total is requested, the same as in fiscal year 1997, for the second
    phase of construction funding for NIH's new Clinical Research Center.
        Substance Abuse and Mental Health Services Administration
    (SAMHSA).--The fiscal year 1998 President's budget for SAMHSA totals
    $2.2 billion, an increase of $34.4 million or 1.5 percent over the
    fiscal year 1997 enacted level. This funding level will continue our
    commitment to improving the quality and availability of mental health
    and substance abuse services. The request dedicates additional
    resources to substance abuse, including a $10 million increase for the
    Substance Abuse Performance Partnership Block Grant and $28 million for
    data collection activities to expand the National Household Survey on
    Drug Abuse (NHDSA) to individual States. A major component of SAMHSA's
    budget will focus on combating recent increases in teenage drug use.
    The 1998 budget request continues to expand funding for the Youth
    Substance Abuse Prevention Initiative by mobilizing and leveraging
    Federal and State resources to call upon Governors to develop State-
    wide prevention plans; raising public awareness and countering pro-drug
    use messages aimed at adolescents and families; and tracking youth drug
    use at a State-by-State level to measure progress of youth drug
    attitudes and use. This proposal directly addresses Goal No. 1 of the
    National Drug Control Strategy to ``motivate America's youth to reject
    illegal drugs as well as the use of alcohol and tobacco.''
        Agency for Health Care Policy and Research (AHCPR).--The fiscal
    year 1998 request for AHCPR totals $149 million in program level, an
    increase of $5.5 million over the fiscal year 1997 level. The fiscal
    year 1998 request will fully fund previous research commitments,
    support the Medical Expenditure Panel Surveys (MEPS), and fund the
    Quality and Cost Effectiveness of Clinical Care initiative. This
    initiative will focus on developing knowledge, tools and strategies to
    improve the quality of clinical care. This research also plays a
    critical role in the continuing effort to reduce health care
    expenditures, while still providing high quality services. The $36.3
    million requested for MEPS will continue this major data survey,
    providing the public with timely national estimates of health care use
    and expenditures, private and public health insurance coverage, and the
    availability, costs and scope of private health insurance benefits
    among the U.S. population.
        Health Care Financing Administration (HCFA).--HCFA is the largest
    purchaser of health care in the world. In fiscal year 1998, Medicare
    and Medicaid expenditures will be about $311 billion for 71 million
    beneficiaries. The fiscal year 1998 request for program management, the
    budget responsible for administering these two programs is $1.8 billion
    or a little over one-half of 1 percent of total Medicare and Medicaid
    outlays. Of this amount, almost 70 percent will go to 75 private sector
    insurance companies throughout the United States who process and pay
    the claims for the care given to Medicare beneficiaries. Only about 20
    percent ($359 million) of the requested amount will go to fund Federal
    employees and their activities (about one-tenth of 1 percent of total
    Medicare and Medicaid outlays). These activities maintain and
    strengthen the Department's commitment to develop more efficient
    operating systems; manage programs to fight fraud, waste, and abuse;
    and promote and monitor managed care spending and quality of care. To
    deal with the growth in new health care facilities joining the Medicare
    program, the Department proposes a user fee for new facilities to be
    collected by the States to cover the cost of initial surveys.
        Administration for Children and Families (ACF).--ACF is the
    Department's lead agency for programs serving America's children, youth
    and families. It also has the lead in implementing the recently enacted
    Personal Responsibility and Work Opportunity Reconciliation Act of 1996
    (Public Law 104-193), including the Temporary Assistance to Needy
    Families (which replaces the Aid to Families with Dependent Children
    program), the child care entitlement program, and new research and
    evaluation activities.
        The fiscal year 1998 budget for ACF totals $34.6 billion, including
    $19 billion appropriated under the Personal Responsibility and Work
    Opportunity Reconciliation Act of 1996. Our request includes $8 billion
    for discretionary programs that promote safe and healthy children and
    youth and support our Nation's working families including: $4.3 billion
    for Head Start to provide an additional 36,000 children with Head Start
    experience and establish strong foundations for a total of nearly
    836,000 children and their families; $1 billion for the Child Care and
    Development Block Grant; and $410 million for a range of discretionary
    programs that help States and local communities protect children,
    including a new Adoption Initiative to bring more foster care children
    into healthy, stable homes.
        The fiscal year 1998 budget also includes almost $27 billion for
    entitlement programs. Of this amount, approximately $17 billion is for
    the Temporary Assistance for Needy Families (TANF) program, which
    transforms welfare into a system that requires work in exchange for
    time-limited benefits. A total of $2.2 billion (this includes $107.5
    million in estimated carryover from fiscal year 1997) is requested for
    child care programs to allow States maximum flexibility in developing
    child care programs. This amount combined with $1 billion in
    discretionary spending requested for the Child Care and Development
    Block Grants, will further the Administration's commitment to
    supporting families and moving families from welfare to work. In fiscal
    year 1998, we estimate that Federal and State governments will spend
    about $3.5 billion in order to collect over $13.7 billion in child
    support payments--an 8 percent increase over 1997. The budget also
    includes $4.3 billion for Foster Care, Adoption Assistance and
    Independent Living programs. The President's Adoption Initiative
    proposes to pay incentives to States for increases in adoptions of
    children from State foster care systems. This new entitlement to States
    will result in no net increase in outlays because increases in Adoption
    Assistance will be offset by savings in Foster Care.
        Administration on Aging (AoA).--The fiscal year 1998 budget for AoA
    provides $838.2 million for programs aimed at maintaining or improving
    older Americans' quality of life. For fiscal year 1998, AoA requests
    $291.4 million for Supportive Services and Centers, to provide funding
    for the nationwide network of 57 State units on aging, 661 Area
    Agencies on Aging, 6,400 senior centers, and more than 27,000 service
    providers. Also requested is $469.9 million for Nutrition Services, to
    continue providing the 242 million congregate and home-delivered meals
    served to vulnerable senior citizens. In addition, AoA requests $9.3
    million for in-home services for the frail elderly, $16.1 million for
    grants to Native Americans, $15.6 million for preventive health
    services, and $4.0 million for aging training, research and related
    programs. Finally, to improve service and streamline administration,
    the request includes three program changes: a consolidation of the
    various programs authorized under Title VII of the Older Americans Act
    into a single Grants to States for Protection of Vulnerable Older
    Americans program, with total funding of $9.2 million; a transfer of
    the Alzheimer's Disease Demonstration Grants to States program ($8.0
    million) from the Health Resources and Services Administration (HRSA)
    to AoA; and the transfer of DOL's Community Service Employment for
    Older Americans program ($440.2 million) to AoA.
        General Departmental Management (GDM).--The fiscal year 1998 budget
    request provides a program level of $192 million for General
    Departmental Management (GDM), including an appropriation of $172
    million and intra-agency transfers of $20 million in one-percent
    evaluation funds. GDM supports those activities associated with the
    Secretary's roles as chief policy officer and general manager of the
    Department through nine Staff Divisions (STAFFDIVs): the Immediate
    Office of the Secretary, the Offices of Public Affairs, Legislation,
    Planning and Evaluation, Management and Budget, Intergovernmental
    Affairs, General Counsel, and Public Health and Science, and the
    Departmental Appeals Board. In fiscal year 1998, the GDM request
    includes funds for Policy Research--formerly a separate appropriation
    account--to support research on issues of national importance.
        Office for Civil Rights (OCR).--The OCR requests $21 million, an
    increase of $1 million above fiscal year 1997. OCR has made significant
    progress in addressing issues such as race discrimination in access to
    health care and discrimination against persons with disabilities. The
    fiscal year 1998 budget request supports outreach and other compliance
    initiatives that seek new ways of preventing civil rights problems and
    addressing potential discrimination in HHS programs. This includes
    implementation of new nondiscrimination requirements covering adoption
    and foster care placements that will support the President's Adoption
    2002 initiative.
        Office of Inspector General (OIG).--The OIG requests a
    discretionary budget of $32 million, a decrease of $3 million below the
    comparable fiscal year 1997 level. OIG will focus its resources in the
    following areas: evaluating various options and methods to increase
    collections in the Child Support Enforcement Program; assessing the
    adequacy of the Food and Drug Administration's control over
    investigational new drugs; investigating grant and contract fraud,
    research fraud, and allegations of wrongdoing in the Department's
    public health programs; and auditing management control systems and
    financial operations.
        In addition, the Health Insurance Portability and Accountability
    Act of 1996 appropriates funds to OIG for the Health Care Fraud and
    Abuse Control Program. OIG will receive between $80 million and $90
    million in fiscal year 1998, to be determined by agreement between the
    Secretary of HHS and the Attorney General. Under this program, OIG
    will: build upon and expand the proven effective policies and practices
    of Operation Restore Trust; enhance general Medicare fraud and abuse
    enforcement activities; and develop innovative anti-fraud initiatives.

                                   mammograms

        Senator Specter. We will have 5-minute rounds for each
    member.
        I begin, Madam Secretary, with the issue of mammograms. The
    National Institutes of Health panel finding that mammograms
    were not warranted for women in the age bracket 40 to 49 has
    caused quite a stir. I have had a series of field hearings in
    my own State, and, as you know, we had Dr. Klausner of NCI and
    other witnesses appear here. You talk about a report which is
    coming in the course of the next 2 months. My own view is that
    the evidence is substantial, if not overwhelming, that
    mammograms for women 40 to 49 are very helpful and do save
    lives.
        It seems to me that there ought to be a prompt conclusion
    to that effect.
        When you take a close look at what the NIH panel did, they
    had prepared a press release which they had really not intended
    to disclose publicly and the matter sort of got out of hand.
    Dr. Klausner said he was shocked by it.
        My question to you, Madam Secretary, is do you have the
    authority administratively to say that Medicaid will cover
    mammograms for women 40 to 49?
        Secretary Shalala. I think the answer is yes, I probably do
    have that authority. But let me tell you what we are going to
    do.
        Senator Specter. Before you go on, there are some women
    under Medicare in the age 40 to 49 category, disabled, SSI.
    Could they also be covered by an administrative order?
        Secretary Shalala. Well, it is not necessary. Let me
    explain.
        Medicare must cover all medically necessary services. If a
    doctor recommends that a disabled woman, who would be in the
    category covered by Medicare, needs a mammogram, that mammogram
    will be covered through the Medicare Program because Medicare
    covers all medically necessary services.
        As you know, most of the people on the Medicare Program are
    the elderly, over age 65. Mammograms certainly are covered for
    them.
        Senator Specter. I do know that. That is why I talked about
    the disabled.
        The point I am coming to--and I would like to cover this
    within my first round of 5 minutes--is that if it is medically
    necessary, as you say for the disabled, under Medicare it will
    be covered. There is a strong message given here to the
    insurance world that mammograms are not warranted.
        I chose my word carefully and I noticed you focused on the
    word. If there is a way to avoid coverage of the payment, I
    think it is reasonable to expect the insurance community will
    not cover those payments.
        What I am looking for is a prompt determination that
    mammograms are warranted for women in the 40 to 49 category.
    You and I talked about this briefly when you returned just in
    time for the State of the Union speech. You had been traveling
    overseas and I had expressed an interest in having you appear
    the next day, when Dr. Klausner came. This is a matter which I
    think requires clarification early-on.
        When Dr. Klausner was here in January, he said that he
    expected the meeting in February to resolve the matter, and it
    has not resolved the matter. When there is a public
    determination that mammograms are not warranted for women 40 to
    49, many women are reading that beyond that age bracket to mean
    that mammograms are not really necessary.
        I heard some very compelling testimony yesterday at the
    Hershey Medical Center from women who are very bitter about the
    determination, saying that women were not using mammograms. A
    very distinguished African-American woman from Lancaster
    testified very forcefully about this point.
        What I am looking for is an early message that mammograms
    are warranted for women of age 40 to 49. What I am trying to
    move toward is how that can be accomplished. That is why I
    asked you in a very pointed way if you have the authority,
    administratively, to do that.
        Secretary Shalala. In Medicaid, the States would decide
    what optional benefits there are. The National Cancer Advisory
    Board did not come to a conclusion at the February meeting.
    They did appoint a working group and do intend to give us a
    recommendation in 2 months, which is what they reported to us
    on this issue.
        Senator Specter. Why so long?
        Secretary Shalala. Two months?
        Senator Specter. Yes; why so long? I think 2 months is too
    long.
        The panel came out several weeks ago. He testified here, I
    believe on January 21. They were supposed to have something
    done in February. Every day that passes is a day when women are
    not tested.
        I think 2 months is too long.
        Secretary Shalala. Well, let me say that the National
    Cancer Advisory Board believed that they could make
    recommendations within a 2-month period. As you know, this is
    an area in which there has been controversy. But no woman
    should stop from going to her doctor or requesting a mammogram
    if she believes that she wants a mammogram.
        Now in terms of the National Cancer Institute's
    recommendation, their advisory board has said that they would
    report back to us in 2 months. Dr. Klausner has referred it to
    that advisory board; 2 months does not seem to me to be a long
    period of time in an area in which we need as clear a response
    as we possibly can get from our experts.
        Senator Specter. Madam Secretary, this will be my last
    question because the red light is on and I do want to observe
    the time. But I also want to follow up on your last statement.
        When you say that women should get a mammogram if they need
    one, that won't even make a footnote anywhere. If you say that
    Health and Human Services will cover the payment for mammograms
    for women 40 to 49 because the Health and Human Services
    Secretary determines that they are warranted, that will make a
    headline. It will make an impression on a lot of women.
        Secretary Shalala. The Department will come to a conclusion
    on a scientific guideline. I will wait for a clear
    recommendation from Dr. Klausner, as to how the Department
    ought to act on this matter. It is extremely important that the
    Department rely on the advice of the scientists who have been
    empowered to advise the Secretary on this matter.
        Senator Specter. Well, Madam Secretary, I respectfully
    disagree with you about the timing. The panel came to a
    conclusion on January 23 about saying that mammograms were not
    warranted for women 40 to 49. I think there was a lot of damage
    done in the interim between then and now. I think before the
    panel came to a conclusion or made the statement that it did
    that it should have had a better basis for doing so before
    causing all of this angst among women. And I think that Dr.
    Klausner should have had an answer when he came before this
    committee in February, certainly by late February; 2 months is
    a very long time for millions of women not to have mammograms.
        Secretary Shalala. Senator, I think that the point I am
    making is that there has to be a clear scientific basis for the
    kinds of health requirements that the Department puts in place
    on the Government programs.
        Senator Specter. Well, was there a clear scientific basis
    that mammograms were not warranted for women 40 to 49 when the
    NIH panel came to that conclusion?
        Secretary Shalala. Well, I am not going to substitute my
    judgment for Dr. Klausner's or for the National Cancer
    Institute's Advisory Board who are reviewing that particular
    standing ad hoc panel's recommendation.
        What Dr. Klausner has told me is that the National Cancer
    Advisory Board working group will report back in 2 months. When
    we have that information, we will provide that to you and to
    the women in this country.
        Senator Specter. Well, my question went to a different
    point.
        You say there has to be a clear scientific basis to say
    that mammograms are warranted for women 40 to 49. I am asking
    you if there was a clear scientific basis for the NIH panel to
    say that mammograms were not warranted for women 40 to 49.
        Secretary Shalala. Dr. Klausner has said to me that he has
    a different reading of the literature than that particular NIH
    panel and, therefore, he wanted to refer to the National Cancer
    Advisory Board for a clearer basis and a clearer
    interpretation. I will rely on his judgment on that.
        Senator Specter. Well, I am still on a different point. You
    are saying you want a clear scientific basis before you say
    mammograms are warranted for women 40 to 49. I am asking you if
    there was a clear scientific basis for the contrary conclusion,
    that mammograms were not warranted for women 40 to 49.
        If you put it out in the field that they are not warranted
    without a clear scientific basis, I don't see the problem in
    retracting it. There was no clear scientific basis for the NIH
    panel finding that mammograms were not warranted for women 40
    to 49.
        Secretary Shalala. Senator, that is your conclusion. I must
    rely on the National Cancer Institute.
        Senator Specter. Oh, do you have a different conclusion?
        Secretary Shalala. I'm not saying that I have a different
    conclusion. I'm relying on the advice from the head of the
    National Cancer Institute. When he gives me that clear advice
    after consultation with his own advisory board, I will;
    obviously, the Department will pass that on in as clear a form
    as possible.
        The trouble here is that there has been enormous confusion
    not just in that particular panel, but in a number of different
    statements that have been made. What I don't want to do is to
    reverse myself without the proper advice of the cancer
    specialists at the National Cancer Institute when they give me
    that information, and they said that they would give it to me
    within a reasonable timeframe, within the next 2 months. Then
    we will communicate that as clearly as possible.
        Senator Specter. Have you reviewed Dr. Klausner's testimony
    before this subcommittee?
        Secretary Shalala. I have and I know what Dr. Klausner
    said, and I know what he said afterward, after the initial NIH
    panel reported. What I am making very clear is that I intend to
    respect the process he has set up before we make additional
    public statements.
        Senator Specter. Well, my question to you was whether you
    read Dr. Klausner's testimony before this committee. You said
    you did and then you said you knew some other things. Then you
    said you were going to wait for the scientific community.
        His testimony before this committee was emphatic that there
    was not a clear scientific basis for the NIH panel's finding
    that mammograms were not warranted for women 40 to 49. Now that
    is what stands without a clear scientific basis. There may be
    some dispute as to whether there is a clear scientific basis
    for the contrary conclusion, that mammograms are warranted for
    women 40 to 49. I would ask you to review that.
        I do not think there is a sufficient sense of urgency,
    Madam Secretary, with all due respect, in the approach you are
    taking and the approach Dr. Klausner is taking. He makes a
    public statement after the NIH panel's finding that he is
    shocked, and then he waters that down when he comes in here. He
    says there will be a determination by the end of February and
    now we are waiting for 2 more months.
        Well, I have made my point. I wouldn't like to see the
    Congress act on these matters. But I don't think there is
    sufficient sense of urgency in your department on this.
        Secretary Shalala. I think that everything we have done for
    the last 4 years on breast cancer in relationship to women, on
    improving the quality of mammogram standards, on the national
    breast cancer action plan is an indication that we not only
    consider this a priority but the clarification and clear
    communication with women is at the top of our priority list.
        The National Cancer Advisory Board is, in fact, the
    critical board on cancer issues. Dr. Klausner has indicated
    that they are reviewing the issue, and I don't think that any
    woman who has breast cancer--and all of us are worried about
    breast cancer--thinks that we should take more than 24 hours on
    an issue like this. But we want to make sure that that board,
    which is the supervising board for the National Cancer
    Institute, has given us a clear description of what they
    believe the position should be.
        I cannot in any way disagree with your conclusion that we
    should not take more than 2 minutes on this. But I will respect
    the process and we will report back as quickly as we possibly
    can.
        Senator Specter. Now, Madam Secretary, I am not talking
    about 2 minutes and I am not criticizing what you have done on
    breast cancer otherwise. I am commending you for it. But when
    it is a matter of dollars and cents and there is no clear
    scientific evidence, I think the word ought to come from the
    Secretary of Health and Human Services that, notwithstanding
    the cost, we are going to see to it that mammograms are made
    available for women 40 to 49.
        We will proceed in order of arrival.
        Senator Murray.

                       opening remarks of senator murray

        Senator Murray. Thank you, Mr. Chairman. I am delighted to
    be back on this committee after a 2-year-absence. The issues of
    this committee are very important to us and my constituents and
    many of the programs that we deal with are very high on my
    priority. So I am glad to be back and am anxious to begin work
    on the fiscal year 1998 appropriations bill.
        Madam Secretary, I want to welcome you here today as well.
    I want to take this opportunity to commend you for your efforts
    over the years on behalf of our most vulnerable citizens, the
    children, the disabled, senior citizens. We all very much
    appreciate it. Your expertise and knowledge has really helped a
    lot of us go through these issues over the last 4 years.
        I am especially delighted that you and I share many of the
    same priorities. I look forward to working with you as we try
    to enact some of the President's initiatives in this Congress.
        I would like to focus my comments and questions on the
    issue of children's health.

                               uninsured children

        As you know, the Democratic leadership has really placed
    high on our agenda the enactment of a universal health
    insurance bill for children. I know that you have long been a
    champion for improving access to quality health services for
    our children and have helped in the last 4 years to improve
    access to immunizations, prenatal care, and well baby care. I
    really want to encourage you to continue in that direction. I
    think it is absolutely vital.
        As I have gone around my home State, I have seen a lot of
    new, innovative programs that deal with those uninsured
    children, children whose parents are at work but whose income
    places them above Medicaid eligibility. But they still do not
    get access to health insurance.
        I have heard of things like clinics that are supported by
    hospitals in an effort to reduce the cost of treating uninsured
    children. King County has a 1-800 number now for parents to
    call to ask for information about treating their child, instead
    of going to an emergency room. And I have seen some great
    school-based health clinics.

                            new innovative programs

        I want to ask you this morning what kind of innovative
    programs you have seen out there to serve our children so that
    their only exposure to health care is not through the emergency
    room.
        Secretary Shalala. Well, there are a lot of programs,
    including the one in your own State, the basic health plan
    plus.
        The way we are doing it now in this country is that each
    State is designing their own program to try to increase the
    amount of coverage for children. Some States are obviously
    trying to make certain that more children are covered by
    Medicaid, which is often the easiest way. Other States are
    trying to subsidize working parents to help them pay the
    premiums. Other States are expanding their community health
    centers so that more children know that there is a community
    health center to come to, and by the expansion of school health
    programs, sometimes contracting with an HMO or other form of
    organized care.
        So it is all of the above. And, in fact, the President's
    own initiative takes advantage of that as opposed to a single
    expansion of a program or developing a new entitlement. It
    takes advantage of the different strategies that are going on
    in States.
        Washington, for instance, has 141,000 children who are not
    insured. Getting at that group, we suggest involves giving the
    State money directly so that they can improve on the programs
    they are already doing, as well as finding children that are
    eligible for Medicaid. It also, keeps some children in health
    insurance if they are enrolled on Medicaid and their parents
    get a job, and keeps them there for 1 year so that the State
    could find another way of getting them insured.
        Many people have been concerned about what happens if
    employers start dropping health insurance for kids, if the
    State starts to cover kids. That is easy to take care of
    because you can simply have a rule that if the employer
    provides health insurance for the children of any employee,
    they have to provide it for their low income employees. That
    takes care of that issue.
        Senator Murray. I appreciate that. I really want to work
    with you on that because one of the obstacles, I think, to
    welfare reform succeeding is young mothers in particular who go
    back to work, do not have health care, and drop out of the
    workplace because of that problem. So we need really to focus
    on this and to work all of us together to address that issue.

                          disproportionate share funds

        I have one other quick question on my time. Many of our
    hospitals are currently using their disproportionate share
    moneys to fund services for the uninsured, especially our
    children. I am really concerned that efforts to reduce the
    disproportionate share moneys and retarget them could
    jeopardize especially children.
        Can you talk about how the administration is going to deal
    with that?
        Secretary Shalala. I think our approach to disproportionate
    share, particularly in the Medicaid Program--and we do get some
    savings through that program--is an approach that is balanced.
    What we try to do is to retarget and to make sure that the
    money is actually going to hospitals that do serve people who
    don't have insurance; and, really, that the money is used for
    the purpose for which it was originally designed.
        States have different levels of disproportionate share
    money, depending on how they participated in the program. But
    our effort is to keep that money in hospitals that, in
    particular, have a heavy burden.
        So I think you would find that consistent with the points
    that you are making.
        Senator Murray. Thank you.
        Thank you, Mr. Chairman.
        Senator Specter. Thank you very much, Senator Murray.
        Senator Hutchison.

                          remarks of senator hutchison

        Senator Hutchison. Thank you, Mr. Chairman.
        I think that the chairman certainly covered the mammogram
    issue well. But I do want to say that I think the NCI jumped
    awfully quickly in 1993 on the basis of one study from Canada
    to take away the guidelines for women between age 40 to 49, and
    that since that time the preponderance of the studies have
    shown otherwise, that there are actual, quantifiable savings of
    lives when women have gotten mammograms between the ages of 40
    to 49.
        So I really hope and I will ask you if you will do
    everything within your power, understanding, of course, that
    you are looking to the experts, but, nevertheless, the buck
    stops with you. You really do have the power to issue the
    initiatives that will make sure that insurance does cover women
    between the ages of 40 to 49 in government programs.

                         nci guidelines for mammograms

        I just will ask you if you plan to take a leadership
    position to encourage NCAB and NCI to give us clear guidelines.
        Secretary Shalala. The answer is absolutely yes.
        Senator Hutchison, I feel the way Senator Specter does and
    everyone else. I am profoundly irritated by the fact that we
    have not sent clear messages, that we appoint panels, and even
    if we agree with their conclusion, the balance and the tone of
    the discussion is often not very helpful.
        While I fully want to back up the scientific leaders, they
    have to understand that these are real people with real lives
    that need to make informed decisions but that need some
    guidance from scientific leaders.
        I will do everything I can both to make sure that we get
    this report as quickly as we possibly can, but, once having
    gotten it, it has to be as clear as it possibly can be.
        Now science cannot always be as precise as we want it to
    be. But on this issue in particular, we have not distinguished
    ourselves. I will do everything I can to make sure of that, as
    will Dr. Klausner, who gets it.
        Senator Hutchison. I must say that I agree with you.
        Secretary Shalala. I must say that he is really trying both
    to reflect the advice he is given, but understands that there
    are real lives involved here and that the women of this country
    and their families deserve straight answers.
        Senator Hutchison. Madam Secretary, I do believe that there
    is great hope in Dr. Klausner. I do think he gets it. Besides
    the hearing that we have had, I have talked to him twice now
    about this issue. I think he gets it. I hope so. He must
    because I think that many of us--and I think you are in the
    same category--have been so frustrated that it has taken so
    long. And, frankly, I think that, particularly with our
    volunteer groups, really giving an initiative to educating
    women and making them more aware of the need for early
    detection, I think we were on a roll. Then, all of a sudden, in
    1993 there is a muddled message and it is hard to keep the roll
    when all of a sudden now the scientists say well, it really is
    not proven, it is actually that out of 10,000 lives, it may be
    only 34 percent of them.
        Now give me a break--only 34 percent of 10,000 women might
    be saved with early detection.
        So I am frustrated. I hope that you will do everything you
    can.

                             cdc screening program

        Let me just ask you this question. One of the outflows of
    this kind of muddled message is the Centers for Disease Control
    which funds a full service early screening program to reach
    minority populations across our country. Currently, it targets
    women over the age of 50.
        Now if we can get a clear message from the NCI, will you
    immediately take steps to lower that to targeting women over
    the age of 40?
        Secretary Shalala. Let me say that when we do get a
    recommendation, what we normally do is review all of our
    programs, and we certainly will review that.
        The point of that particular CDC program is that we have a
    much smaller percentage of minority women, as you well know,
    who are getting mammograms, that we wanted to have a targeted
    program to try to increase the number of minority women who
    receive mammograms. That was the purpose of that. Whatever the
    standard is, we would want to extend our work to a different
    age group.
        So let's hope that we get a clear answer. Now scientists in
    general give us clear answers. We expect confused answers from
    the economists, not the scientists. I think that is why we are
    all sort of thrown off on this issue. Normally, the scientists
    walk in here and they are pretty straight forward in terms of
    what they are recommending.

                               benefits and risks

        Senator Hutchison. Well, excuse me, Madam Secretary, but it
    seems that in most other diseases they are straight forward and
    they will say here are the benefits of this treatment and, yes,
    here are the risks. We get that in every other disease
    treatment that I can remember. I mean, my gosh, every time you
    open up a medicine bottle it has the risks listed and what it
    is recommended.
        Secretary Shalala. Some more clearly than others.
        Senator Hutchison. I think look, we are adult, intelligent
    people. We can take the benefits and also the risks, and that
    is a clear message because the risks are minuscule compared to
    the benefits. And I think that can be said clearly.
        When you talk about the Centers for Disease Control
    funding, which I think is absolutely warranted--I was at Howard
    University a couple of weeks ago and I think the minority women
    should be our focus because they are the ones who end up not
    having early detection and, therefore, the disease is more
    fatal. I would just say that we really need to go to that 40
    and above age group where early detection is so important
    because we know that the disease is generally more virulent in
    younger women.
        Secretary Shalala. I think Dr. Klausner agreed with you in
    his testimony because what he said about the NIH report was
    that it overly minimized the benefits and overly emphasized the
    risks for the 40 to 50 population. He thought it should have
    been a better balance.
        We will do our best.
        Senator Hutchison. I just do not see why this disease is
    treated so differently when we have benefits and risks given
    and we can make judgments, as in every other disease I have
    seen. Why not this one? Why take a segment of the population
    that is a large segment that can be saved with relatively
    little expense and not do it? Why not do it?
        Secretary Shalala. I think that Dr. Klausner realizes that.
        My point is and my reluctance to overrule people and
    pronounce on the science is that we have done a good job in a
    bipartisan manner over the years in building these first-class
    scientific enterprises. We have always, when we wanted to make
    a pronouncement of science, put the scientists in front of us
    to talk about it and to give people advice.
        The American people trust these scientists when they speak
    on these subjects. I see no reason for us to change that
    process. But I think Dr. Klausner gets it. He communicates
    clearly himself, and he is going to be working with his
    advisory board, which is the premier advisory board on cancer,
    to make sure we get very clear messages out.
        Senator Hutchison. Thank you, and thank you, Mr. Chairman.
        Senator Specter. Thank you, Senator Hutchison.
        Senator Faircloth.

                          remarks of senator faircloth

        Senator  Faircloth. Thank you, Mr. Chairman.
        Madam Secretary, thank you for being here this morning. It
    is nice to see you.
        Secretary Shalala. Thank you.

                                medicare savings

        Senator  Faircloth. I am particularly pleased to see that
    the President's budget numbers on Medicare savings come close
    to what was proposed in the Congress last year. But what
    bothers me is how the administration achieves the savings. That
    does concern me.
        The budget extends the life of the Medicare trust fund for
    an arbitrary period of time through accounting maneuvers. I
    don't think it looks at the realistic long-term solution, and
    particularly the shift in home health costs from part A to part
    B looks like there has been fiddling with the books to prolong
    the life of a system that well could be near collapse and that
    is in desperate need of reform.
        Over the next 60 years, the ratio of workers paying into
    the system to beneficiaries taking money out will be cut in
    half. I think it is important to be honest with the American
    people about the condition of the Medicare Program and the
    realistic options that we are going to have to face to fix it.
        Secretary Shalala. Senator----
        Senator  Faircloth. Wait a minute. I have a further
    statement that I want to finish.
        Secretary Shalala. Sorry.

                        welfare spending on noncitizens

        Senator  Faircloth. Further, I am troubled by the
    administration's proposal to increase welfare spending by $21
    billion especially to pay for welfare benefits to people who
    are not citizens of this country.
        I was surprised and disappointed at the suggestion that we
    will start erasing about one-third of the savings we achieved
    from the welfare law passed last year. Almost one-third of our
    savings will be lost by so-called opening up the bill to
    increase benefits to noncitizens. It sends a wrong message. It
    clearly sends a wrong message to immigrants and potential
    immigrants, that in this land of opportunity, a nice package of
    taxpayer funded, taxpayer financed, government benefits awaits
    you upon arrival. I think that is sending the wrong message.
        Madame Secretary, I look forward to working with you on
    solutions to the problems, and I am confident that we will find
    common ground.

                          losses from fraud and abuse

        Now here is my question. Madam Secretary, the General
    Accounting Office estimates the losses in the Medicare system
    from fraud and abuse, estimates that these two items cost
    taxpayers from $6 billion to up to $20 billion in fiscal year
    1996.
        Can you give me an update on the Department's efforts to
    stop the flow of money to those who cheat the system? By
    anyone's account, those billions of dollars could and should be
    used elsewhere.
        I would like an answer.
        Secretary Shalala. Thank you very much, Senator. Let me
    give you three quick answers.
        We have launched, as a demonstration, Operation Restore
    Trust, which is the largest effort in the history of the
    Medicare Program. It was launched 3 years ago to combat fraud
    and abuse in the system. It is a combination of the inspector
    general, the U.S. attorneys, as well as State officials--State
    attorneys general, for example, and State district attorneys--
    to investigate and prosecute fraud.
        We have had the largest settlements in the history of the
    Medicare Program.
        Second, we have launched an effort to change systemic
    problems in the Medicare Program. Some of them we have done
    administratively, some of them are in the bill as part of our
    Medicare reforms, which are critical. While they are not
    necessarily scored, they will, in the long run, according to
    our inspector general, produce real savings for the program.
        The Congress last year in the Kennedy-Kassebaum bill
    extended Operation Restore Trust to a national program and
    finances it out of the Medicare trust fund. So we will have,
    for the first time, a beefed up effort to deal with fraud in
    the program.
        I believe over the next couple of years that the trustees
    will be able to report--and I am a trustee--because of the
    actuaries that, for the first time in history, our fraud, our
    antifraud efforts, are starting actually to reduce costs in the
    trust fund. So I think we have done a first rate job getting
    our act together and actually getting at both systemic fraud as
    well as through our investigations and through our teamwork in
    this area.
        Let me comment quickly on the other two issues that you
    raised.

                                   immigrants

        On welfare, we have no intention of reopening the welfare
    bill. The President believes that the welfare to work bill
    ought to be continued. We have asked for restoration of some
    funds for part of a population that was pulled in--not for new
    immigrants but for immigrants that were here, disabled
    immigrants that were here before August of last year,
    immigrants who often are sitting in nursing homes, some of whom
    were disabled after they arrived in the United States. They may
    have worked for 3 years and then been in a terrible accident,
    or they are elderly and frail and sitting in a nursing home. So
    we do not shift those costs on to the States.
        We have also asked for coverage for children at the same
    time who are disabled, and in our judgment those costs should
    not be shifted on to the States.
        But for new immigrants coming in, we have all agreed on the
    rules. For people who are able-bodied, we have all agreed on
    this new welfare program. We are talking about people who
    cannot work, who have no other means of support, often who are
    sitting in nursing homes, totally disabled. And we're talking
    about not shifting those costs on to the State.
        Senator  Faircloth. Did these immigrants not have sponsors
    when they came in?
        Secretary Shalala. Many of them did not. But the
    sponsorship was not legally binding as it is now. That has been
    tested in the court.
        Only 40 percent of immigrants who came to this country
    before we rewrote the laws had sponsors. Some of them are
    refugees. So it is not a question of some legal entity that we
    can enforce. We can now because the law has been changed.
        So we are talking about a narrow group of people who cannot
    work. This is not reopening the welfare bill.
        Senator  Faircloth. My time is up. Thank you, Mr. Chairman.
        Senator Specter. Thank you very much, Senator Faircloth.
        We are pleased to have the chairman of the full committee
    here today, Senator Stevens.
        Senator Stevens. Thank you very much. I don't have any
    questions, Mr. Chairman. I am pleased to see Secretary Shalala
    here and wanted to come in and listen to the testimony.
        Secretary Shalala. Thank you, Mr. Chairman.
        Senator Specter. Thank you very much, Mr. Chairman.
        Senator Kohl.
        Senator Kohl. Thank you very much, Mr. Chairman.
        Secretary Shalala, it is always good to see you. Welcome to
    our panel.
        Secretary Shalala. Thank you, Senator.

                            remarks of senator kohl

        Senator Kohl. As you know, I have introduced legislation to
    expand and strengthen our Nation's child care system by
    creating a $150,000 a year tax credit for businesses. This
    credit would be used by any business or group of businesses to
    set up an onsite or a nearsite day-care center to cover
    operating costs of the facilities, to contract for child care
    resource and referral services, and community child care
    centers and for the training of child care workers.
        We all understand the critical shortage of quality child
    care. I believe that this bill makes sense for families
    struggling to find care and it makes good business sense
    because workers will be able to concentrate on their jobs and
    not on the questions of child care for their children.
        I would like to ask you if you have had the chance to
    review or think about this legislation and whether you think it
    makes sense; also whether you think the administration would be
    willing to throw its support behind this piece of legislation.

                         tax credit for child day care

        Secretary Shalala. Senator, as you know, the President does
    have a tax credit, a bill with a number of different
    recommendations, and we believe this ought to be discussed as
    part of that. Obviously we share your view that quality child
    care in particular and getting businesses, encouraging
    businesses to get more deeply involved in providing child care
    is very important. It is going to be increasingly important as
    we move hundreds of thousands of people from welfare to work.
        For some people, onsite child care is perfect. For other
    people, they will have to get it provided in other ways. We
    think this ought to be part of both that tax discussion as we
    get further along in the discussion.
        But, obviously, we support efforts to encourage businesses
    to get more deeply involved in child care. Whether this
    particular tax credit, in light of some of the other things--
    you know, we obviously have a balanced budget bill. We
    certainly are prepared to discuss it, though, as part of that
    discussion.
        Senator Kohl. Thank you.

                        training for child care workers

        Madam Secretary, this subcommittee previously set aside a
    very small amount--it was only $1 million--for scholarships to
    childcare workers who wish to be certified as child development
    associates. This CDA was not funded last year.
        If the Federal Government is willing to spend over $400
    million a year training health care professionals, even when it
    is known that there is a glut of doctors, and if your
    department is able to send New York hospitals $400 million not
    to train medical residents, then surely we can invest just a
    few million to help train childcare teachers when there is a
    severe shortage.
        Do you agree that CDA scholarships are worthwhile
    investments and worthy of your support? Do you think that it
    makes sense for this subcommittee to, once again, set aside
    funding for these CDA scholarships, as modest as that funding
    is, $1 million?
        Now it does account for 4,000, 5,000, or 6,000 training
    slots.
        Secretary Shalala. Exactly. States are now using their
    block grants in part to send people to school. I was recently
    in South Carolina, for example, where the State is, in fact,
    supporting former welfare recipients to get community college
    degrees, to get certified as childcare workers.
        Senator, I don't think that any of us would object to a $1
    million program in the context. What we have tried to do with
    welfare reform, though, is to give the States the block grant
    and then encourage them to do the right thing, as opposed to
    increasing the number of specifically categorical programs. No
    one is going to object and I don't think the White House is
    going to yell at me if I don't object to a $1 million program.
        But I do want to make the point that this is exactly the
    direction in which we want to encourage the States to go, using
    their block grants, as childcare will be a new area of
    employment and a real opportunity, I think, for people who are
    coming off of welfare, as well as a Head Start expansion area
    for employment. Certification is important and, as I indicated,
    South Carolina is already doing this. I think a number of other
    States are, too.

                                 child support

        Senator Kohl. I have one more question.
        Madam Secretary, the administration has made good progress
    on child support enforcement, collecting a record $1 billion in
    1996. But there are serious problems that still plague the
    system.
        For example, an estimated $60 million has been spent to
    develop an automated child support system in Wisconsin, to
    simplify and improve collections and disbursements. And yet,
    all the parties, including clerks, enforcement agencies, and
    parents, still report glaring problems with checks arriving
    weeks late.
        When they do arrive, the checks are often too little or too
    much.
        I imagine you would agree that this is a poor return on a
    very large investment. With an October deadline approaching for
    States' automated systems to be fully functional, I would like
    to ask what you are doing to assist Wisconsin and other States
    to overcome these glaring problems, with which I am sure you
    are familiar.
        Secretary Shalala. Right, I am very familiar with it.
        As you well know, we just approved a waiver, which I
    notified you about and which you and I had talked about earlier
    before we approved it. Wisconsin, in essence, is providing for
    those who are on welfare the back child support so that they
    are going to be up to date on child support for those families
    that are currently on welfare, which is really a remarkable
    step.
        But we are giving extensive technical assistance to the
    States to get their computer systems up and going. As you know,
    that deadline was extended for the States because they could
    not meet the earlier deadline.
        I am crossing my fingers and the States need to pay more
    attention. We have been communicating clearly with the States.
    There may be some States where I need to pick up the phone and
    talk to the Governors and say you need to get on this.
        It is in their financial interest to do that. But, more
    importantly, if we are asking people to go to work, the minimum
    we ought to do is be collecting that child support and doing it
    accurately.
        We are both working carefully with the States and providing
    technical assistance. I am happy to continue to report back to
    the Congress specifically on that issue.
        Senator Kohl. I thank you and I want to express my
    appreciation to you for the way in which you went out of your
    way last week to help Wisconsin set up a particular pilot
    program that you pioneered. It is going to be very helpful in
    Wisconsin.
        I do not want to spend money or time here today talking
    about it in detail because it would take too much time to
    explain it, but I do appreciate your efforts in our behalf.
        Secretary Shalala. Thank you very much, Senator. As you
    know, I am no longer recused from Wisconsin.
        I gave up my tenured appointment, Senator Harkin, to stay
    with all of you, for that opportunity.
        Senator Harkin. Good. I am pleased to hear that.
        Secretary Shalala. So I can now spend time on the Wisconsin
    issue.
        Senator Kohl. Thank you, Madam Secretary and Mr. Chairman.
        Senator Specter. Thank you very much, Senator Kohl.
        Senator Harkin, our distinguished ranking member, the floor
    is yours.

                           remarks of senator harkin

        Senator Harkin. Thank you, Mr. Chairman.
        I apologize for being late. I had another hearing I had to
    attend to before I came over here, Madam Secretary. Again, I
    welcome you here today. Thank you for the great job you are
    doing. I want to state that publicly and for the record. It is
    an outstanding job.
        I am delighted to hear that you have given up your tenure
    and you are staying here with us.
        Have you now broken the record? Are you the longest serving
    Secretary of Health and Human Services we have ever had?
        Secretary Shalala. Yes.
        Senator Harkin. I appreciate that. I want to thank you for
    your work and your cooperation with this committee in every
    aspect.

                                   nih budget

        Madam Secretary, there are just a few items that I am
    really concerned about.
        The President's budget provided for a 2.6-percent increase
    for NIH. This means that right now, 1.9 percent of our GNP will
    be spent on nondefense research, compared to 5.7 percent of GNP
    in 1965.
        I think we are going in the wrong direction on NIH research
    funding.
        As you know, I have worked in the past with Senator
    Hatfield and others, and now with Senator Specter, to try to
    find some dedicated funding sources for NIH. I know you have
    taken a lead on it, and whatever we can do to start getting the
    public aware of this we just have to do. We cannot continue to
    go in this direction.

                                   head start

        I want just to mention Head Start again. Just prior to this
    hearing, I was at a hearing on school breakfast and school
    lunch programs. Of course, the Head Start Program is a program
    that precedes that and gets these kids ready for school. I
    think we just need, again, to think about how we are going to
    focus more effort and energy on preschool education through
    programs like Head Start.

                            waste, fraud, and abuse

        But most importantly, I want to thank you and commend you
    for the recent successes that you and Inspector General Brown
    just had. Last week, it was announced that Medicare would
    recover $325 million from a major supplier of clinical lab
    services that was found to be double billing and billing for
    tests that were never performed.
        Thank you and keep up the great work. That is good. Go
    after them. Get that money back.
        Again, I think eliminating the waste, fraud, and abuse is
    so important and what you have done there I think is just
    great.

                                     oxygen

        Let me ask a question about, again, waste, fraud, and
    abuse. I want to mention oxygen. This subcommittee held
    hearings in November 1994 in which it was revealed that
    taxpayers and beneficiaries are losing hundreds of millions of
    dollars a year in overpayments just for oxygen. We found that
    the Veterans Administration, which uses competitive bidding,
    was paying less than half of Medicare's payment for oxygen. At
    that hearing, Mr. Vladeck promised to initiate a process to try
    to reduce this excessive rate.
        There is general agreement that there is waste here. The
    Republican budget plan agreed with my call for a 40-percent
    reduction. That is one of the parts of the Republican budget
    plan with which I agree. So you can see this crosses lines.
    This is not a partisan issue. Everyone agrees that there is a
    tremendous amount of waste there.
        It is my understanding that the President's budget does not
    contain a recommended cut for oxygen because the Department is
    planning on moving forward with a reduction administratively
    using your inherent reasonableness authority.
        But we wait and we wait, and every day we wait we lose
    another $1 million. Can you tell us what is going to happen
    here?
        Secretary Shalala. It is going to happen shortly. We plan
    to publish our proposed notice before the next time you talk to
    me I hope it will be out. But it will certainly be out shortly.
    It is currently being reviewed and we do have our
    recommendation ready.
        Senator Harkin. When is the next time I am going to talk to
    you? [Laughter.]
        We just have to move on this.
        Secretary Shalala. I agree, Senator. It will be done.
        Senator Harkin. On the positive side, let me just say that
    the President's budget does include a proposal for competitive
    bidding for all part B items. I know you had a hand in that and
    I compliment you for that. I look forward to working with you
    on it.

                         office of alternative medicine

        Last, while I believe very strongly that we have to
    increase our funding for NIH, let me just say that I am greatly
    disappointed in the leadership at NIH in one specific area. In
    1991, we started the Office of Alternative Medicine at NIH. It
    has had quite a rocky existence since that time. The goal was
    to foster the evaluation of alternative or unconventional
    medical treatments, facilitate the collection and dissemination
    of information regarding alternative therapies. It is part of
    the Office of the Director.
        The OAM is one of six special coordinating offices within
    the Office of the Director--the Office of Research in Women's
    Health, Rare Disease Research, Office of Dietary Supplements,
    et cetera.
        Now I have tried to work with the leadership at NIH on this
    in a reasonable, straight forward manner, knowing that
    sometimes things take a little time. But after 6 years I can
    tell you, Madam Secretary, that there has been no leadership at
    NIH in this area.
        As I look at NIH's budget this year, Mr. Chairman, the
    biggest cut in the Office of the Director, at his request, is
    in the Office of Alternative Medicine. It is the biggest single
    cut, from $11.9 million down to $7.5 million, which is where it
    was a couple of years ago. Everything else is either level
    funded or slightly increased.

                       nih director's discretionary fund

        But I will note one other thing for the record. In the
    Director's discretionary fund, he is requesting an increase
    from $8.4 million to $10 million.
        Senator Specter. Senator Harkin, may I interrupt you for
    just a moment?
        I have to excuse myself for a moment. So when you finish
    your round, we will then go to Senator Bumpers. I will be back
    within that time.
        Senator Harkin. OK, thank you, Mr. Chairman.
        Senator Specter. Thank you very much.
        Senator Harkin. For the Director's discretionary fund, you
    are asking for an increase from $8.4 million to $10 million.
    What is this all about? Why are they cutting that, when they
    want to increase the Office of the Director?
        I am going to ask, Madam Secretary, that the Director give
    me some information. I know he is going to be up here and I see
    some of his people here in the audience. I want a full
    accounting of what that discretionary fund was used for last
    year, the year before, and the year before--every single,
    solitary penny of it, of that discretionary fund.
        Secretary Shalala. Dr. Varmus will be up here in a couple
    of days to go into this in detail. But let me say that we have
    proposed to continue funding at the 1996 levels.
        What we did with the additional money in 1997 was we
    initiated several clinical studies. The out-years for those
    clinical studies, which are not reflected in the Office of
    Alternative Medicine, will be paid for by the various
    institutes themselves where those studies are located.
        So I think it is somewhat misleading to look directly at
    the Office of Alternative Medicine budget when the out-years
    are being picked up in those other institutes. I will leave it
    to Dr. Varmus to go into that in some detail.
        I think he is willing to take criticism at any time. But I
    think in this case they have actually done the right thing. The
    Office of Alternative Medicine initiates the studies, and then
    the various Institutes actually provide the funding.
        I think that you will see reflected in the followups to
    those actually a serious commitment to alternative medicine,
    which I know that both Dr. Varmus has and certainly the
    leadership of the Department has.
        Senator Harkin. Well, I will get into that more with Dr.
    Varmus when he comes up. But I just wanted you to know, Madam
    Secretary, since you are his boss. Also I want you to know that
    I have followed this since I started it in 1991. My patience is
    gone and I am going to ask what clinical trials they have
    really been engaged in. I am going to ask, also, what the
    Office of Alternative Medicine has done directly.
        A meeting was held in my office a couple of years ago and
    certain statements were made about the Department, about the
    Office of Alternative Medicine actually doing grants out of
    there to entities outside of NIH. I don't know of one that has
    happened yet--not one.
        The foot dragging in this area has just been abysmal--
    abysmal. I will have more to say about that with Dr. Varmus.
    But I just thought, since his people were here, that I would
    give him a heads up.
        But I do want to know for the record where every single
    penny of the Director's discretionary money went last year and
    for the last few years, and what that money is being used for,
    Madam Secretary.
        Again, just for the sake of emphasis, we have a real
    problem with the Office of Alternative Medicine--a real
    problem. I intend to go into it at length with Dr. Varmus when
    he is here. If it takes all day I will go into it with him at
    length--not with you, Madam Secretary.
        Senator Bumpers.

                           remarks of senator bumpers

        Senator Bumpers. Senator Harkin, are there any other
    Senators who have not had a chance to ask questions?
        Senator Harkin. I don't know. I don't think so.
        Senator Hutchison [presiding]. I believe you are the next
    one.
        Senator Bumpers. I'm the only one left then. Thank you.
        I just want to ask a couple of questions that I am quite
    sure have already been covered. But for my own edification, I
    will ask them, though I may be repeating here.

                                medicaid savings

        I think about this Medicaid cut, which has been very
    troubling to me.
        We are cutting Medicaid. We are capping Medicaid in some
    way that I do not understand. But it is supposed to save $22
    billion. But if you add the proposed health initiatives,
    children's health initiatives back in, then the saving is only
    $9 billion. Is that fair to say?
        Secretary Shalala. I think the children's health initiative
    is--let me get the number--yes, $9 billion, that's correct. The
    children's health initiative is $13 billion. No; it's not.
    Excuse me.
        Let me have the right sheet, please. [Pause.]
        Oh, he has it right.

                           per capita cap on medicaid

        Senator, if you would like, I would explain what the per
    capita cap does.
        Senator Bumpers. Please.
        Secretary Shalala. First of all, in the Medicaid Program,
    what you don't want to do is to in any way cut off the program
    from eligible people. The cap was put on as part of the
    balanced budget exercise because we need to make sure that we
    are not increasing programs beyond what their actual costs are.
        In this case, we put a per capita cap on, which means that
    in the State of Arkansas, for instance, we will have a cost
    number for disabled children, for children that aren't
    disabled, for the elderly, and for adult disabled.
        For each of those, Medicaid spends a differing amount of
    money, children that are not disabled being the cheapest. So
    there will be a growth rate for Arkansas and for every other
    State, but by category and by individual.
        The point is to try to introduce some discipline and slow
    down the growth of the program but not to slow down the growth
    by cutting out individuals. If more people are eligible for
    Medicaid, they will be allowed to come into the Medicaid
    Program because they are eligible. What we are going to do is
    slow down the actual growth in spending. But we are going to do
    it in a pretty sensitive way because we recognize that if more
    disabled people come in, the State is going to be spending more
    money.
        Now you can argue with whether these programs should be
    capped or should not be capped. This is a pretty sensitive cap
    because it has a growth rate, a cost-of-living plus some
    medical cost number on top of it. It does introduce some fiscal
    discipline into the program.
        Two-thirds of the saving in Medicaid, though, are taken
    from the disproportionate share program. For a State like
    Arkansas, which gets very little DSH money, it would not be
    significantly effected. For some other States that get a lot of
    DSH money, they would be affected by the DSH reduction.
        That, again, is our attempt to refocus the disproportionate
    share hospital payments, by protecting the neediest safety net
    providers. But, again, we are indeed trying to get some savings
    out of the program.

                          children's health initiative

        Now the children's health initiative, I would argue, is on
    top of this. We did not cut the Medicaid Program and then, on
    the other hand, try to reinvest some of the resources. There is
    not a direct relationship. We tried to get some discipline in
    the Medicaid Program and then tried to figure out a way in
    which we could stop children from losing their health insurance
    and expand health insurance in this country, particularly for
    children.
        So that is a separate effort.
        In the area in which you have provided outstanding
    leadership, immunization, getting all of the kids in this
    country covered will help us on that overall issue. As you well
    know, that is the fundamental thing that a health insurance
    program must do.
        Senator Bumpers. Of course I understand precisely what you
    are saying. But everything you read, if you can believe it, is
    that the President has been so dismayed about the welfare
    reform proposal that the children's health initiative is a
    simple effort to rectify some of the wrongs, some of the damage
    that the welfare reform bill is doing. That is going to lead me
    to my next question.
        Would we not just be better off to leave Medicaid alone
    than we would by cutting it and putting the $13 billion back
    in?

                             non-medicaid children

        Secretary Shalala. Senator, one of the things that you all
    did last year was to separate Medicaid from welfare reform, and
    eligible children can continue because we did not block grant
    Medicaid.
        Children that are eligible for Medicaid are eligible for
    Medicaid independent of their parents' work status if they are
    in that category.
        The children's health expansion is for non-Medicaid
    children for the most part; 7 million of the 10 million that we
    are going after are non-Medicaid children.
        What we are trying to get at is working class kids.
        Senator Bumpers. Would you say that again, Madam Secretary.
        Secretary Shalala. On the children's health initiative, of
    the 10 million kids that do not have health insurance, 7
    million of them do not now have Medicaid; 3 million are
    eligible for Medicaid and are not getting Medicaid. We need to
    go out and find them.
        Senator Bumpers. So it is that 7 million that you are going
    after?
        Secretary Shalala. Our working-class kids. These are kids
    whose parents have jobs.
        Senator Bumpers. They simply have no health insurance?
        Secretary Shalala. They just don't have health insurance.
    They just make too little money, or they are in a job where
    they cannot afford the health insurance. I have some people
    that provide services to me. Their employers actually provide
    health insurance, but they cannot afford the premiums because
    their incomes are under $20,000 a year. They are not eligible
    for Medicaid and they cannot afford health insurance.
        This is for working class families, for low income workers.
    Sometimes they have two part-time jobs and they cannot get
    health insurance for their kids.
        Senator Bumpers. I have one additional question, if I may,
    Mr. Chairman.
        Senator Specter [presiding]. I think it would be shorter
    just to let you go ahead. [Laughter.]

                                  medicaid cap

        Senator Bumpers. Thank you.
        You have made a very good argument against what I perceived
    were the facts in this matter. But for a State like mine, which
    has been raising the eligibility limits as best they could--
    they have been doing a magnificent job in Arkansas raising the
    eligibility limits--putting a cap on Medicaid is going to have
    a chilling effect on States doing that, isn't it?
        Secretary Shalala. I don't think so because it is a per
    capita cap; because they would not be penalized if they added
    someone to the Medicaid rolls; because they still will get the
    same amount of money per person.
        Senator Bumpers. I know, but that is my very point. They
    are going to be very reluctant to take on anything that
    increases the Medicaid roll because the money is not going to
    increase, and the only way they can make up the difference is
    to cut services for those who are already on it.
        This is not Medicare. You cannot cut Medicare $100 billion
    and not cut services.
        Secretary Shalala. Yes; but, again, we are cutting the
    growth rate. We think we have put in a growth rate that is good
    enough to continue to encourage the States to add people to
    their Medicaid rolls. They are going to continue to get the
    Federal match for the amount of money they match.
        What we are doing is putting a cap on the growth rate in
    Medicaid, and we have put it softly on a per capita basis so
    that if a person is added in Arkansas, they will continue to
    get a Federal match for that and they will continue to have to
    put in their own money. But the growth rate is slowed down.
        Senator Bumpers. Thank you, Mr. Chairman.
        Senator Specter. Thank you very much, Senator Bumpers.
        Senator Gregg.

                            remarks of senator gregg

        Senator Gregg. Thank you, Mr. Chairman.
        Senator Specter. Senator Gregg, your timing is impeccable.
    I thought Senator Bumpers' was, but you only had to wait 20
    seconds, whereas he had to wait 1 full minute.

                                  dsh payment

        Senator Gregg. I have been trained by Senator Bumpers in
    this. [Laughter.]
        I was wondering if you could talk a little bit about the
    DSH payment process. A significant amount of your savings is
    projected in that area.
        Have you formalized what your plans are in that area?
        Secretary Shalala. Basically, the gross savings from DSH is
    about $7.7 billion. What we would like to do is to reduce some
    of the DSH money.
        In high DSH States, we bring the reduction down a little
    more slowly than we do in low DSH States--and I think yours is
    one of them--have integrated that money into their whole health
    care system. We are squeezing down on the DSH payment.
        We are doing some retargeting, asking the States to do so,
    giving them some flexibility to target toward safety net
    providers and making sure that we are targeting pretty
    sensitively to those areas that are really providing safety net
    services.
        Senator Gregg. You have not decided on a formula then, have
    you?
        Secretary Shalala. I don't think we have. I think we can
    give you the outlines of what we would like to do.
        Senator Gregg. Is it only $7 billion? There is $22 billion
    in savings, is my recollection, in Medicaid, and I thought a
    high percentage was coming from DSH.
        Secretary Shalala. That is the gross.
        Senator Gregg. I thought a high percentage of that $22
    billion was coming from there.
        Secretary Shalala. It's about $15 billion in total, because
    it is two-thirds the $22 billion.
        Senator Gregg. So it is $15 billion that you expect to get
    from the DSH payments?
        Secretary Shalala. Right.
        Senator Gregg. Your rate of growth on the per capita
    payment is what?
        Secretary Shalala. GDP plus two in 1998, plus one in 1999,
    into the year 2000.

                        state flexibility under the cap

        Senator Gregg. What sort of flexibility will you be giving
    the States to function under the cap?
        Secretary Shalala. They will have full flexibility to move
    people into managed care. They will no longer have to come to
    us for waivers, which is the most important flexibility they
    have been asking for, to make managed care mandatory. In
    addition to that, they will have the authority to redistribute
    some of the DSH money to safety net providers. Then we waive
    the Boren amendment.
        It is actually the usual suspects that the States have been
    asking for. We have now put it forward as part of this plan.
        Senator Gregg. For which I congratulate you.
        Secretary Shalala. Thank you.
        Senator Gregg. I also do not personally have a problem with
    your cap concept if there is enough flexibility given to the
    States. I think that the issue is the flexibility to the
    States.
        Are you giving any flexibility on the individual coverage
    area relative to age and issues such as that?
        Secretary Shalala. The States now have tremendous
    flexibility. We simply ask them to guarantee the benefit
    package. Most of their growth has been in optional benefits,
    not in adding people to the basic benefit package.
        So they have tremendous flexibility in adding benefits or
    subtracting benefits, and that will continue to be part of
    this. As I indicated, most of their growth really has been in
    these optional benefits that they have added on.
        Senator Gregg. You then do not expect to give flexibility
    in the area of age, such as the fact that now people have to be
    covered, I think it is down to 3 and up to 21, or something?
        Secretary Shalala. No; you know, the last thing you would
    want to do is to reduce the number of people who have health
    insurance in this country. That is why the children's health
    initiative is so important.
        We have 10 million kids basically left. What you don't want
    to do is to take away with one hand and then add with another
    hand.
        So what Congress passed is I think, we are up to 13, or
    something, that States are covering everybody under 13.
        Senator Gregg. In what other areas will you not be giving
    the States flexibility?
        Secretary Shalala. Well, the basic benefit package. The
    basic benefit package is the one area that the States will have
    to continue, and fair and equitable treatment, so that they
    cannot provide a package to the same category of person in one
    part of the States and not in another part of the State.
        The sort of fundamentals of the Medicaid Program will
    continue. The major thing they have been asking for waivers on,
    is to move people into managed care without waivers and the
    repeal of the Boren amendment. These are the critical areas so
    the States can properly price and pay for certain kinds of
    services.

                                   fda budget

        Senator Gregg. May I ask you about another area, which is
    in FDA? Are you comfortable with taking up that at this time?
        Secretary Shalala. Sure. This committee does not have
    jurisdiction, but I am happy to answer a question about FDA.
        Senator Gregg. It is an area that I am interested in. I
    notice that the administration is suggesting I think a 7-
    percent increase in budget authority but an 8-percent cut in
    the appropriated amounts, with the difference being made up
    basically on fees that are assumed by OMB.
        I was wondering if you could tell us how you are going to
    really do this.
        Secretary Shalala. Well, as you know, we do have an
    agreement with the pharmaceutical industry on fees, and that
    increase in resources has, in fact, helped us to reduce the
    turn-around times on drug approvals. That very much is an
    industry administration agreement which has been in place over
    the last few years.
        The new OMB proposal extends that to cover a lot more, and
    it is, as you can imagine, quite controversial.
        Senator Gregg. There is about a $60 million gap between
    what is being suggested we appropriate and what was
    appropriated this year for FDA.
        Secretary Shalala. Right.
        Senator Gregg. My sense is that it is going to be very hard
    to make that up with fees and that there are going to have to
    be cuts in FDA activity.
        I am just wondering if you folks have a contingency plan
    for those cuts if we budget to the appropriated level that you
    want.
        Secretary Shalala. I think that what Dr. Friedman, the
    acting director, will say is that we will work with our
    Appropriations Committee on that issue. But, obviously, what
    the administration is recommending is a further shift to a fee
    structure.
        Again, we had to make these decisions within the context of
    a balanced budget. These are not individual, free-standing.
    They are all connected. Senator Specter and Senator Harkin are
    concerned about the NIH increase not being sufficient. But we
    did our best within the context of having to bring down this
    budget.
        The same answer I would give for the cap on Medicaid, the
    per capita cap on Medicaid. Again, we are working within the
    context of a balanced budget.
        Senator Gregg. I guess my concern is that this number may
    end up being a bit of a plug in that it is probably not going
    to be a do-able number. Therefore, either we hammer FDA or else
    this budget will be out of balance by about $60 million in that
    area.
        I would be interested in any other suggestions you have for
    addressing it as we go down the road.
        Thank you.
        Senator Specter. Thank you very much, Senator Gregg.
        Madam Secretary, you have drawn more members than I can
    recollect at a hearing, certainly any that I have presided
    over. We have had nine members here today, and there are a
    great many questions to be asked. We began one-half hour late
    because you had the commitment with the President, which is
    certainly understandable. There are a great many more questions
    to be asked.
        I am going to have to excuse myself shortly before noon.
    What I would like to do at this point is this. As chairman,
    there are a lot of questions which I need to ask which the
    staff needs to integrate into our budget. So what I will do is
    ask you the questions, which highlight what I would like your
    personal response to, contrasted with just submitting questions
    for the record, which is of a lesser qualitative level.
        My prepared statement differed from yours slightly, Madam
    Secretary, on the total amount of your department, and I think
    we ought to specify for the record that when you cite $376
    billion, you include the Medicare benefits; and when we have
    used the figure of $223 billion, that is appropriated
    entitlements, Medicaid, AFDC, black lung, matters of that sort;
    and my $31.7 billion discretionary for this committee differs
    from your $34.7 billion because you have included FDA and the
    Indian Health Services, which we do not include.
        Let me go over the questions which I would like your
    personal attention to on responding.

                medicare reimbursements for speciality providers

        The question of Medicare reimbursements for specialty
    providers is an enormous one. HCFA's plan proposes to cut
    payments to thoracic surgeons by 40 percent, neurosurgeons by
    30 percent, and cardiologists by 25 percent. We would like to
    get the specifics as to where HCFA stands.
        In order to hold to the January 1, 1998, statutory
    implementation date, these proposed regulations have to be
    issued by May 1 with a final rule by November 1. This gives us
    a problem on comments. So the earliest you could provide that
    to us we would really appreciate.
        There is an issue on the medical education carve-out--which
    I am now looking for.
        Secretary Shalala. It would be in our Medicare reform
    proposal.
        Senator Specter. Looking at the graduate medical education,
    the question is how are we going to handle that with so many
    managed care providers. We will give you some specific
    questions on that. That is one which we hear about all the
    time.
        The issue of Medicaid coverage for attendant care services
    is a big one. I sent you a letter on that just a few days ago
    and I understand that you have not had time to respond to it. I
    visited a home where people were in wheelchairs and their
    requests were very, very urgent asking that Medicaid provide
    this kind of service not in nursing homes but attendants in
    their own homes. It is hard to see on the face of the record
    why that flexibility would not be provided when it would appear
    to be much less expensive to provide them in that context.
        I would very much appreciate your specific response on that
    question.
        [The information follows:]

                      Medicaid for Attendant Care Services

        Health and Human Services is currently considering
    attendant service programs as a policy option. The Robert Wood
    Johnson Foundation is funding a demonstration program that
    should be operational in January 1998. The Department is
    looking forward to seeing the results of this project for
    purposes of estimating the cost effectiveness of attendant
    services. In addition, the President's Medicaid proposal will
    enable States to offer home and community-based care without
    the need for a 1915(c) waiver. This new flexibility should
    encourage more States to adopt attendant service programs.

                           breast cancer action plan

        Senator Specter. I wrote to you on a complicated matter
    involving the issue of the action plan back on November 1st of
    last year and you have not responded to that. I am concerned
    because we are moving through a good part of the fiscal year. I
    had a very specific letter from a very distinguished
    constituent of mine, Frances Visco, who is a breast cancer
    survivor and cochairman of the Action Plan Committee, dated
    October 10. I had responded to her and sent a letter to you. We
    had taken this up with Dr. Klausner. This involves the action
    plan, where the administration had requested $14 million last
    year as a carryover from the preceding year, $14,750,000. We
    had agreed with the administration's request.
        The action plan includes quite a number of items which are
    not covered by the National Cancer Institute, legal and ethical
    issues regarding the gene on predispositioned cancer, clinical
    trials, publication of the problems, a biological research bank
    and other crosscutting matters, the minority health issue, and
    the environmental clusters.
        When Dr. Klausner was here, in a rather lengthy exchange we
    asked him just how much money he wanted. The funding is in
    excess of $400 million now. On this action plan funding we have
    about $14,750,000. It seems to me from what I have seen that
    the action plan or the alternative crosscutting matters have
    been very beneficial. One of the first things I saw when
    becoming chairman was the missiles to mammograms, where the CIA
    had put in $2 million.
        As I have had these field hearings on mammograms for ages
    40 to 49, there is a big issue of informing women who simply do
    not know about mammograms, many more in the African-American
    community. Women's 2000 just had a very good forum a few feet
    from where we are in this building.
        So I would like you to respond and give us your thinking on
    that.
        [The information follows:]

                           Breast Cancer Action Plan

        As Secretary, I am aware of the fiscal year 1997
    Appropriations Conference Report language stating that $14.75
    million was available in the National Cancer Institute budget
    to be used to fund the National Action Plan on Breast Cancer
    (NAPBC), that this Plan was to be coordinated by the OPHS
    Office of Women's Health, and that the funds were to be used
    ``to implement the Plan's activities and other cross-cutting
    Federal and private sector initiatives on breast cancer.'' I am
    also aware that the Action Plan's Steering Committee has
    recommended that $14 million of the funds in fiscal year 1997
    be ``returned'' to the National Cancer Institute and used only
    to fund research on breast cancer.
        The Department of Health and Human Services has made breast
    cancer a top national health priority and supports a broad
    range of programs in research, early detection, service
    delivery, and education. Through its public-private
    partnerships, the Action Plan's efforts to date have been very
    successful in stimulating the scientific community to devote
    more attention to this dreaded disease, and helping to identify
    and address gaps in our scientific knowledge and health care
    policies, in ensuring consumer involvement, and improving the
    publics access to critical information about breast cancer.
        As Secretary I intend to meet with the members of the
    Action Plan's Steering Committee before I complete my
    deliberations on their recommendation as to how best to use
    fiscal year 1997 appropriated funds. No final decisions have
    been made and of course the Department will keep the Committees
    informed of our plans. It is important that we work with the
    Congress to get the right things done. Our goal is to ensure
    that a wide range of public and private organizations continue
    to get involved and join together in efforts to eliminate
    breast cancer and its devastation to women and their families.

                                    cloning

        Senator Specter. Then we have the issue of cloning, which
    is the matter where you were with the President earlier today.
    This committee had provided that there would be no funding for
    the creation of human embryo research. It may be that this
    committee will need a hearing on that subject because we do
    fund to make sure that there is a legislated determination as
    to what ought to be done on the cloning issue.
        We may ask you to come back for that one. That seems to be
    a matter of enormous importance, enormous public concern at the
    moment. The President, of course, has addressed that today.

                      marijuana use for medicinal purposes

        Then there is the issue of marijuana use for medicinal
    purposes. The New England Journal of Medicine has called for a
    revamping of marijuana laws to allow for medical usage. You
    have also the Arizona and California initiatives pass, which
    provides a classic conflict between Federal and State.
        I think no one wants to legalize drugs, but there is a
    question as to where we head in that direction.
        Let me deviate from my format and ask you for a response as
    to how you are looking at that and how you evaluate the New
    England Journal of Medicine conclusion as to where you see that
    issue heading. Is there a way to really have that dichotomy for
    legitimate medical purposes without getting into the
    legalization?
        I notice the Attorney General said that she would not
    prosecute cases where there was legitimate medical treatment.
    How do you view that vis-a-vis a matter for your Department,
    contrasted with the Attorney General?
        Secretary Shalala. Let me say that there is currently no
    evidence that smoked marijuana has a strong medical use. There
    is evidence that some of the properties of marijuana in a pill
    form, which has been approved by the FDA, is useful for medical
    purposes.
        We have had, I think, only one application in 10 years. The
    NIH has recently convened a group of people to talk about the
    possibility of more research in this area, in the area of
    smoked marijuana. But what we recently did was convene that
    panel to see whether NIH could expand and get more actively
    involved in research in this area.
        But we have said very clearly what the scientific findings
    are in this area, and that is on smoked marijuana there is no
    evidence since there has been almost no research in this area
    and we know very little about dosage or anything else. We have
    objected to those referenda in part because they are not based
    on any kind of science.
        In our judgment, they were, in fact, using the issue of
    marijuana for medical purposes as a cover for the legalization
    of marijuana. As you well know, the teenage drug problem in
    this country is essentially a marijuana problem, and we believe
    that that does, in fact, encourage smoking of marijuana by
    teenagers.
        Our research already shows that marijuana harms the brain,
    the heart, the lungs, and the immune system. It limits
    learning, memory, perception, judgment, and certainly you would
    not want anyone driving a car who had smoked marijuana.
        Senator Specter. Madam Secretary, I do not want to cut you
    off, but are you suggesting that there ought to be more
    research in this field?
        Secretary Shalala. Yes.
        Senator Specter. Will your Department undertake such
    research?
        Secretary Shalala. We have, and, in fact, the National
    Institutes of Health, after convening its workshop--I'm not
    sure we have the final report on that workshop--are looking at
    the issue of expanding the existing scientific work on smoked
    marijuana.

                            needle exchange program

        Senator Specter. Let me move on because my time is moving
    on. There is a collateral issue where a comment from you I
    think would be helpful.
        The February 18 report to the committee on studies
    reviewing the needle exchange program found:

        Overall, these studies indicate that needle exchange
    programs can have an impact on bringing difficult to reach
    populations into systems of care. These studies also indicate
    that needle exchange programs can be an effective component of
    a comprehensive strategy to prevent HIV and other blood-borne
    infectious diseases in communities that choose to include them.

        Here, again, it is a very difficult matter, where we do not
    want to promote drug use, beyond any question where there is
    something which will stem proliferation of drugs. What do you
    see as the next step?
        I note that you stopped short of a certification here. What
    do you see as a followup to the current status of the matter?
        Secretary Shalala. Because the NIH convened a panel, they
    are going to report to me shortly. Obviously, our summary of
    these studies indicates that we have, in fact, made progress on
    the research.
        As you indicated, what the studies do tell us is that
    needle exchanges as a strategy can be an effective component to
    prevent HIV and other bloodborne infections. It also tells us
    that these programs are good at pulling people into services.
        Drug addicts who are out there that need services, the
    exchange programs themselves, because they put public health
    outreach workers out there, pull people in services.
        But the fundamental finding is, as part of an overall
    strategy to reduce HIV AIDS, they certainly have been an
    effective part of that strategy. On the issue of the impact on
    drug use, because it is a social science versus science, it is
    self-reporting, and many people believe it is slightly less
    clear in that area. But I think our fundamental point is that
    communities could be reassured, who have funded these efforts
    themselves, that our research is now showing that as part of
    their overall strategy they are getting people into services,
    and on HIV AIDS the impact is increasingly clear.
        The standards that I have been asked to meet are varying,
    depending on what program in the Department. I am in the
    process of reviewing those standards as to what the research
    tells us.

                              abstention programs

        Senator Specter. I have one final question, Madam
    Secretary, and that is relating to the abstention programs.
        Your testimony is pretty explicit on discouraging
    premarital sex among teenagers. You and I will have to talk
    about your difference in approach contrasted to what Congress
    said as to where the administration would be, and that is too
    long a topic to take up now. But we will have to talk about
    that.
        I have seen a fundamental conflict on education on
    abstinence, as to whether it is simply to abstain from sex or
    providing the alternative of, if you are going to have sex, to
    have condom availability.
        Some of the programs go one way and some of the programs go
    another way. I would be interested in your answer to the
    question about dealing with teenagers, to counsel for
    abstinence or to give alternatives.
        Secretary Shalala. I would say two things. First, Mr.
    Chairman, we believe that the issue of the nature of health
    education or sex education in schools is a decision for the
    local community--for the parents, for the school board. The
    content of those programs are very much a local community
    decision based on the values of that community.
        The Federal Government funds, with this committee's
    support, in the welfare bill a substantial amount of the
    abstinence education programs. We are in the process of
    evaluating those. But from what we know, these are effective
    ways of preventing teenage pregnancy.
        Our position is that no teenager ought to be engaged in sex
    and no public official ought to be encouraging a teenager,
    either through programs or through words, to be engaged in
    sexual behavior before marriage. We ought to be clear and
    straightforward in our messages to teenagers on this subject.
        But we do not dictate, nor do we think it is appropriate
    for the Department or the Federal Government to dictate the
    content of the total health education program in a school. That
    is a community decision. We provide resources on abstinence
    education. We also fund some demonstration projects that are
    local initiatives that come to us to be funded.
        Senator Specter. So, if the local community wanted to have
    the additional option of condoms, it is up to them?
        Secretary Shalala. It is up to them.
        Senator Specter. OK. Thank you very much.
        Senator Hutchison.

                               teaching hospitals

        Senator Hutchison. Thank you, Mr. Chairman.
        I wanted to go into the teaching hospital issue. This is
    becoming a great concern, especially as managed care moves in.
    We are losing the ability to train our future doctors.
        The Health Care Financing Administration has granted New
    York a waiver for a demonstration project. But I would like to
    know what your thoughts are on how we can address this issue
    all over the country and make sure that we do have the ability
    to train our physicians, despite the managed care growth
    movement.
        Secretary Shalala. Thank you, Senator. Your State has some
    of the most remarkable teaching institutions in this country
    and some of the great academic health centers. We consider them
    among this Nation's most precious possessions.
        It does cost more to maintain a great academic health
    center, whether it is the Duke University of North Carolina
    complex or the four or five Texas complexes.
        We believe that the money ought to be carved out. We are
    now giving the money directly to managed care, for example. We
    do not believe that all that money is being given back to the
    teaching hospitals. The teaching hospitals have complained to
    us, often bitterly, that they are being asked to provide the
    same kind of discounts that any other hospital would, even
    though we have given additional money to organized care to
    provide for the teaching hospitals.
        We believe it is time to carve out those resources and to
    set them up in a different fund. Some of your colleagues,
    Republican colleagues, on the House side have suggested that,
    rather than taking it out of Medicare, where we have put it, it
    ought to be a separate, free-standing allocation, a
    discretionary allocation, as opposed to pulling it out of an
    entitlement program and making it free-standing.
        I think that our view is that it is so important that we
    get this done this year. We have moved ahead on one
    demonstration, as you noted. We are flexible about how we do
    it, but we think it should be done, so that the money is
    targeted directly to the academic health centers.
        The resources are there in this case. We just have to make
    sure that they are carefully targeted, so we maintain these
    institutions of such great quality.
        In the case of the New York demonstration, New York has 15
    percent of all of the residencies in the country. They came to
    us with an application. There are a couple of other States in
    now.
        Hopefully, before we look at other States, we will have an
    agreement, a bipartisan agreement, on this issue. But let me
    assure you that we also have told New York that, whatever the
    bipartisan agreement is, the New York demonstration, like the
    welfare demonstrations, are included as part of that.
        Senator Hutchison. Well, I certainly think that it is a
    national problem and there is a finite number of medical
    schools that have these residency and internship programs. So
    we certainly need and hope that you will allocate that
    accordingly and fairly.
        Senator Specter. Senator Hutchison, may I interrupt you for
    just a moment to hand the gavel to Senator Gregg, who is next
    in seniority. I will have to excuse myself.
        Senator Gregg. I am going to have to leave, too. So please
    give it over.
        Senator Hutchison. I am leaving also. So, Senator Faircloth
    will be the last one here.
        Senator  Faircloth. And I am leaving soon, too, after just
    a few questions.
        Senator Specter. Well, may I hand you the gavel, then,
    Madam Secretary.
        Senator Gregg. I think the Secretary would be happy to have
    us all leave. [Laughter.]
        Senator Hutchison. We can handle this, Mr. Chairman.
        Senator Specter. Well, we have established the priority.
        Let me thank you, Madam Secretary. This is a very, very
    lively session with many members here, showing the importance
    of these issues. There will be, as there always is, tremendous
    followup among members with you, me to you, Senator Harkin and
    you, and our staffs to staff as we work through this very
    complicated budget on these matters that are of such priority.
    We have so many priorities that it is very, very difficult. Of
    course, it goes over into education, labor safety, and the
    Labor Department. But we will work it out, again.
        We thank you for your cooperation and your great
    contribution.
        Secretary Shalala. Thank you very much, Senator, and thank
    you for the opportunity. I look forward to working with all of
    you over the next 4 years.
        Senator Specter. Thank you.

                        disproportionate share hospitals

        Senator Hutchison [presiding]. Madam Secretary, I just have
    one other comment. It is this.
        I, like Senator Gregg, am very concerned about the policies
    that would be following on the disproportionate share issue.
    This is something that many States have used for serving the
    underserved populations. I hope that your policies will be very
    careful to understand that.
        When you have those ready, I hope that you will give us a
    chance, before everything is in concrete, to comment on those.
    Is that your plan?
        Secretary Shalala. We would be happy to come and talk to
    you about that. Our goal is to make sure the disproportionate
    share money goes to hospitals that are safety net hospitals.
        Frankly, within the context of a balanced budget, I think
    we have fairly treated the Medicaid Program. It is, in fact, in
    the entitlement programs, as you well know, where we have to
    slow down the growth.
        I think we have done this very carefully. But we, of
    course, look forward to working with Congress with both parties
    in working through this issue.
        Senator Hutchison. Let me just say that I served on the
    board of Parkland Hospital in Dallas, which is one of those
    that, frankly, gets dumped on by all of the other hospitals in
    the area because the others will refuse to serve those people.
    So Parkland does it because that is its mission.
        We have others around our State and certainly around our
    country. But I want to make sure that those hospitals are able
    to continue giving that service because they are performing a
    function that, if they were not there, these people would be
    really in a hardship situation. We have done everything
    possible to get the other hospitals or the communities to pay
    for the service that is given. But what we cannot lose is that
    safety net in the hospitals that are doing that.
        Secretary Shalala. Senator, I share your view on Parkland.
    They have a nationally recognized emergency care service, in
    particular. We will do everything we can to protect those truly
    safety net institutions.
        Senator Hutchison. Thank you.
        Senator Faircloth.

                          losses from fraud and waste

        Senator Faircloth [presiding]. Thank you.
        Madam Secretary, I will not delay your lunch.
        I had a quick followup to an earlier question and you
    answered it quite extensively. The General Accounting Office
    estimates up to $20 billion in losses. What I would like for
    you to do is to give me an estimate of what we can expect to
    lose next year from fraud and waste.
        Secretary Shalala. I think the only real number we have is
    the GAO study. But in our reform proposals, the waste in the
    system, where we should not have to pay, is part of the reform
    proposals.
        Do we have the Medicare reform list?
        Let me give you one specific example. Right now, on home
    health care, which is very heavily used in the Southeast, in
    your part of the country, we pay a home health care provider, a
    company, according to where their corporate headquarters is
    located, not according to where the service is provided.
        Now there is a quirk in the law that allows the home health
    care business to bill us from their corporate headquarters. We
    pay on the basis of what the average salaries are. So locating
    your corporate headquarters in a larger city is in the interest
    of that company, even though the service could be provided in a
    rural area.
        We need to pay them in the rural area. That is waste, as
    far as I am concerned. It is not fraud. They are simply taking
    advantage of a loophole in the law.
        Throughout our modernizing proposal, we go after exactly
    that. That is what the inspector general and the GAO has been
    concerned about.
        Senator  Faircloth. Where are most of them located, in Palm
    Springs or Newport?
        Secretary Shalala. No; I think it is Atlanta and in larger
    metropolitan areas.
        Senator  Faircloth. Well, that's it.
        Secretary Shalala. That's an example of waste in the system
    that we take care of.
        Senator  Faircloth. I understand that. I would like for
    someone in your staff to send me a letter estimating what they
    expect it to be next year, and I would be back to talk to them
    about it.
        Secretary Shalala. Fine, sir.
        Senator  Faircloth. I just want a figure.
        [The information follows:]

                      Estimated Cost of Health Care Fraud

        The Office of Inspector General has never estimated the
    extent of health care fraud in our programs. The General
    Accounting Office issued a report which stated ``estimates vary
    widely on the losses resulting from fraud and abuse, but the
    most common is 10 percent.'' We have used that estimate as a
    guideline for our projections of fraud in the Medicare and
    Medicaid program.
        Health care expenditures represent nearly 15 percent of our
    national output. We know the vulnerabilities within the health
    insurance system allow unscrupulous health care providers,
    including practitioners and medical equipment suppliers to
    cheat health insurance companies and Federal programs out of
    millions of dollars annually.

                             surgeons and medicare

        Senator  Faircloth. The next one is this. The cut on
    surgeons--and I am supportive of any cuts. But for heart by-
    pass surgeons it is about 44 percent. Some of them are saying
    it is not feasible to treat Medicare patients.
        Is there any possibility that this would lead to inferior
    care? Is that an unwarranted assumption?
        Secretary Shalala. I don't think so. In general, Medicare
    is now the best payer.
        When I first came here to testify 4 years ago, Members of
    Congress said to me that they knew of hundreds of doctors who
    were going to move away from Medicare. Because the HMO's have
    gotten such severe discounts, we now are a much better payer.
    What we are trying to do is to bring our growth rate somewhere
    near the private sector growth rate for health care as a way of
    introducing some discipline in the system.
        As a result, we do a number of different things in the
    Medicare Program, again, trying to get entitlements under
    control. But, in general, we have been a much better payer over
    the last couple of years than the private sector has been and
    the corporations, because they have negotiated such deep
    discounts with their managed care agencies.
        Senator  Faircloth. If I am not mistaken, we have turned
    out a lot of doctors, so there is not exactly a shortage of
    doctors ready to do most any procedure that is out there.
        Secretary Shalala. That's correct. But in the case of
    surgeons, they have been very disciplined by the number of
    residences and they have done a good job, I think, in keeping
    down the number of residencies.
        The truth is that, as the private sector squeezed down on
    health care growth, as the public sector squeezed down, people
    just are not going to make as much money as they used to make.
    We have to make sure that we pay a reasonable price for high
    quality care, and if the surgeons are concerned that they won't
    be able to provide high quality care, I would be happy to
    carefully look at that information. But I think that what we
    have done is tried at the same time to protect quality as part
    of our overall Medicare cost savings.

                         Additional committee questions

        Senator  Faircloth. Madam Secretary, that is all I have.
    But I do have some questions from several Senators and I would
    like to submit those for the record. If you would, please see
    that they are attended to and answered.
        [The following questions were not asked at the hearing, but
    were submitted to the Department for response subsequent to the
    hearing.]
                         Additional Committee Questions
                                 human cloning
        Question. Madam Secretary, the news that scientists have discovered
    the ability to clone adult sheep is troubling, especially when the
    possibility exists that human beings might also be cloned someday. The
    President announced that the National Bioethics Advisory Board will be
    investigating the legal and ethical issues associated with genetic
    cloning and asked the Board to issue a report in 90 days. Given the
    enormous scope of the questions and implications of this technology,
    will a report done in just 90 days be adequate?
        Answer. A report developed within 90 days by the National Bioethics
    Advisory Commission should be sufficient to guide near-term policy
    making and to establish a valuable framework for further, more detailed
    review and public dialogue.
        Question. Language contained in this subcommittee's bill prohibits
    your Department from funding human embryo research. Is this language
    sufficient to cover research involving cloning of human individuals?
        Answer. The current Appropriations language prohibiting the
    Department of Health and Human Services from funding human embryo
    research does not cover all imaginable research involving cloning of
    human individuals. For example, the Appropriations language does not
    explicitly cover (a) all federal agencies or (b) human embryos created
    for implantation in a woman with the intent of establishing pregnancy
    and conceiving a child--whether the embryos be created by conventional
    in vitro fertilization techniques or by other means such as nuclear
    transfer (i.e., transferring the genetic material of one cell into an
    egg cell from which the genetic material has been removed), an early
    step in the process used by the Scottish scientists in cloning sheep.
    President's Clinton's action on March 4, 1997 to prohibit Executive
    Branch agencies from funding the cloning of human beings was designed
    to fill these gaps.
        Question. If not, do you support legislation prohibiting funding
    for research involving human cloning?
        Answer. I believe that legislation to prohibit funding of research
    involving human cloning would be premature. Once the National Bioethics
    Advisory Commission has completed its assessment of the pertinent
    issues, the Congress and the Executive Branch both should be better
    positioned to determine whether specific new legislation is needed and,
    if so, to define its scope and content.
        Question. NIH recently discovered that a Georgetown University
    researcher was conducting human embryo research with NIH funds in
    violation of the prohibition in the Labor, HHS and Education
    Appropriations bill. That researcher lost his NIH grant and eventually
    resigned from Georgetown. I am troubled that there are people who could
    evade a ban on cloning research and conduct rogue research. Now that
    this technique has been published in the scientific press, do you
    believe there ought to be a comprehensive ban on human cloning to
    include privately funded research?
        Answer. I believe that a comprehensive, statutorily mandated ban on
    human cloning, including privately funded research, would be premature
    at this time. The National Bioethics Advisory Commission should first
    be given the opportunity to complete its assessment of the relevant
    issues. In addition, because of Constitutional limitations, federal
    statutes alone may not be able to cover all private sector activities
    that involve cloning. State legislation may be required as well.
        Question. Is it inevitable, given the power of this technology and
    how easily it can be disseminated, that someone will attempt to clone a
    human being?
        Answer. I feel confident that strong leadership by the President
    and the Congress will do much to ensure that scientists within the
    United States do not undertake cloning efforts that are scientifically
    unjustified and ethically unacceptable. However, as much as I would
    hope otherwise, I cannot rule out the possibility that, within the next
    decade, someone will attempt to clone a human being.
        Question. The authorization of the National Bioethics Advisory
    Board will be expiring this October--do you think the Board will have
    enough time to consider the major important issues?
        Answer. I feel confident that, by the fall of 1997, the National
    Bioethics Advisory Commission will have additional findings and
    recommendations pertaining to the key issues associated with the
    prospect of cloning humans. Furthermore, I expect that the Commission
    will have important findings and recommendations about two other
    topics: (a) the implementation, across 16 federal agencies, of the so-
    called ``Common Rule'' for protection of human research subjects, and
    (b) the implications of the rapidly emerging genetic-testing technology
    for the way health-care providers obtain and use human-tissue samples.
        Question. Cloning technology, whether for better or for worse, will
    be here to stay. Do you believe the National Bioethics Advisory Board
    ought to be made permanent?
        Answer. The concept of a continuing, high-level advisory group to
    address complex issues in bioethics has much to commend it. I look
    forward to working with President Clinton in assessing how best to
    ensure that policy-making within the Executive Branch that involves
    bioethical concerns is supported by relevant data, thorough analyses,
    and sound recommendations.
                 medicare reimbursement for specialty providers
        Question. It has come to my attention that HCFA is planning to
    change the method for calculating Medicare reimbursements to
    physicians. As I understand it, the new system for calculating overhead
    costs, or ``practice expenses,'' could result in very drastic changes
    in payments to physicians. For example, HCFA's plan would cut payments
    to thoracic surgeons by 40 percent, neurosurgeons by 30 percent, and
    cardiologists by 25 percent. Yet, the proposal also would increase
    payments by similar amounts for other providers, such as,
    dermatologists, rheumatologists, and podiatrists. What is the
    justification for such drastic changes in proposed reimbursement rates?
        Answer. We note that changing the method for calculating practice
    expense portion of physician payments was mandated by Congress in the
    Social Security Act Amendments of 1992 and by Congress in the Social
    Security Act Amendments of 1994. Many of the hospital-based surgical
    specialties are startled by the magnitude of the reductions in their
    payments under the preliminary options. For example, as you indicated,
    the reductions in total payments to cardiac surgeons, thoracic
    surgeons, vascular surgeons and neurosurgeons under the preliminary
    options are in the 20 percent to 40 percent range. We must emphasize
    that these options are still preliminary options. We are exploring
    other options for allocating indirect costs. We would note, however,
    that the simulations of impacts we distributed to physicians are
    consistent with earlier studies by the Physician Payment Review
    Commission, completed in 1992 prior to passage of the resource-based
    practice expense legislation by Congress.
        Question. What effect do you estimate shifts in reimbursement of
    this magnitude will have on the delivery of services to Medicare
    beneficiaries?
        Answer. Changes in payments at the beginning of the Medicare
    physician fee schedule were large, yet no adverse impact on access to
    care was detected. Medicare assignment and participation rates are at
    all time highs. Further, we must emphasize that the options and
    methodology are proposed, not final. As we consider further options and
    methodology, we will carefully consider the impacts on beneficiary
    access.
        Question. In order to hold to the January 1, 1998, statutory
    implementation date, I understand that proposed regulations will have
    to be issued by May 1 of this year and a final rule by November 1.
    Given the fact that HCFA halted its survey of physician practices in
    favor of unspecified alternative methodology, how can Congress be
    assured that the new approach fairly recognizes what it costs providers
    to deliver services in both the office and hospital settings as
    Congress intended?
        Answer. The data we are using are the best available. The survey,
    canceled because of unacceptably low response rates, might have
    provided more complete data on indirect costs of physician practices,
    had it been successful. However, the survey would have been only one of
    the data sources that HCFA would have considered for measuring and
    allocating indirect costs. The AMA Socio-economic Monitoring System
    data that we are using as a source of the aggregate direct and indirect
    cost information was always a viable option. Regardless of the data
    source, however, we would still have to design a method for allocating
    these costs to individual procedures. No universally accepted method
    for allocation exists, and we would still be faced with the need to
    determine which method to use.
        HCFA has long supported the use of expert panels for Medicare fee
    schedule issues. We believe the use of such methods is valid and
    credible. We have repeatedly used panel methods for refinement of
    relative values for work. The Clinical Practice Expert Panel (CPEP)
    process was designed with the input of the medical societies. Nominees
    were solicited from specialty societies and societies submitted 100
    nominees. There were over 150 participants in each of the two rounds of
    the CPEPs. In addition, specialty societies provided their own data and
    were present for consultation at the CPEP meetings.
        We have also specifically asked the specialty groups to review
    carefully the Abt CPEP data and provide us with comments. We have
    conducted some ``gross'' internal checks on the CPEP data that confirm
    the general validity of the data. We would also emphasize that during
    the second round of the CPEPs, Abt added panelists with more
    specialized knowledge of certain codes.
        Question. How will there be adequate time for review and comment to
    arrive at a meaningful final rule?
        Answer. HCFA provided public access to the preliminary data for the
    practice expense fee schedule development by hosting a meeting on
    January 22, 1997. At that meeting we presented the data resulting from
    the Abt Associates contract and our preliminary projections for
    selected alternative practice expense fee schedules. In addition, we
    asked the physician groups to respond within two weeks, that is by
    February 5, to provide us with comments on the proposed methodologies
    and other specified issues that we agreed to consider in developing the
    proposal. Almost all the specialty groups have said that this time
    frame is too short, particularly with respect to review of the Abt
    data.
        Actually, we have given the specialty groups far more than two
    weeks to comment on proposed methodologies. We are continuing to have
    open communication with all organizations as we develop the NPRM which
    is expected to be published in May. Following publication of the
    proposed rule there will be an additional 60 days for comment. Thus, in
    making this available prior to an NPRM we extended to nearly six months
    the period of time that medical organizations could analyze and provide
    input into the process.
                     national action plan on breast cancer
        Question. I wrote you on November 1st of last year regarding the
    need to resolve promptly the controversy that has arisen regarding
    funding for the National Action Plan on Breast Cancer. What action have
    you taken regarding this matter?
        Answer. The fiscal year 1997 Appropriations Conference Report
    stated that ``$14,750,000 shall be used to fund the National Action
    Plan on Breast Cancer. Sufficient funds have been provided within the
    NCI for this expenditure. The conferees further agree that this plan
    shall be coordinated by the PHS Office on Women's Health and shall be
    used for implementation of the plan's activities and other cross-
    cutting Federal and private sector initiatives on breast cancer.''
    However, the NAPBC Steering Committee voted on November 7, 1996, to
    recommend to me ``* * * that $14 million of its $14.75 million fiscal
    year 1997 appropriation be returned expeditiously to the National
    Cancer Institute for breast cancer research.'' Of the $14.75 million,
    $750 thousand was approved by the Steering Committee to support
    administrative costs for the NAPBC incurred by the OWH, and these funds
    were transferred from NCI to the OWH. Since the Steering Committee's
    recommendation, I have asked the NCI and the OWH to develop a proposal
    of activities that reflect the broader interests in breast cancer
    issues that I share with the Appropriations Committees. The OWH and NCI
    have identified 16 activities (see attached proposal) to be supported
    by fiscal year 1997 funds. These activities build on the
    accomplishments of the NAPBC, further priority initiatives of NCI and
    the OWH, and address a broad range of critical breast cancer issues.
    Accordingly, an additional $3 million will be transferred to the OWH
    specifically to support innovative, cross-cutting projects on breast
    cancer developed by diverse agencies of the Federal government, with an
    emphasis on public/private sector partnerships. The remaining $11
    million will be spent by the NCI to begin or expand the other breast
    cancer research and collaborative initiatives.
        Question. Why has it taken so long?
        Answer. I met with the NAPBC Steering Committee to hear first hand
    the basis for their recommendation. After this meeting, I directed the
    OWH and NCI to identify breast cancer initiatives that reflect the
    broader interest and intent of the Appropriations Committees. The OWH
    and NCI have been refining initiatives to be supported by these funds
    to ensure that critical issues in breast cancer are being addressed and
    that activities supported by these funds will bring rapid progress in
    our fight to eradicate this disease.
        Question. What do you view as the role of the Plan and whether the
    Steering Committee should move ahead with identifying additional areas
    of priority for action?
        Answer. The NAPBC serves a unique role as a catalyst for action,
    bringing together public and private sector partners to ensure a
    unified and focused effort to eradicate breast cancer. The NAPBC's role
    in stimulating action to fill gaps in our efforts is critical. The
    Steering Committee of the NAPBC is currently examining whether to add
    new priority areas to the Plan, and I expect to receive their
    recommendations along with a proposed fiscal year 1998 budget by the
    end of June. They continue to make substantial progress in addressing
    the six priorities identified four years ago and have numerous
    accomplishments to their credit (see attached).
                                  Attachment 1
                             breast cancer proposal
        Activity 1: Cancer Genetics Network (CON)--$1 million.--The Cancer
    Genetics Network (CON) will serve as a dynamic informatics and research
    infrastructure linking institutions that test individuals for
    hereditary cancer susceptibility as well as provide counseling and
    interventions to prevent cancer in these individuals. Research projects
    will be funded to achieve the CON objectives to: (1) develop and
    disseminate high-quality information about genetic susceptibility and
    testing; (2) develop and assess approaches to informed decision-making,
    counseling, and laboratory testing procedures; (3) collect and pool
    data linking specific mutations with phenotypes; and (4) enhance
    participation in cancer genetics research. The NCI will serve as the
    lead agency for this activity in collaboration with the PHS OWH.
        Activity 2: Breast Cancer Genome Anatomy Project (C-GAP)--$1
    million.--The goal of the Breast Cancer Genome Anatomy Project is to
    scan a human tumor for all the genetic alterations present in it and to
    develop clinical tools that will be of direct use in making diagnoses,
    estimating prognosis, and selecting treatments for patients with breast
    cancer. Projects will be supported to prepare cDNA libraries from tumor
    cells and to develop sensitive, accurate, and economical high-
    throughput technologies to use for scanning tumors. The NCI will serve
    as the lead agency for this activity in collaboration with the PHS OWH.
        Activity 3: Clinical Trials Partnership on the World Wide Web--
    $200,000.--Funds will be provided to enhance the NCI Physician Data
    Query (PDQ) system to establish a national resource of user-friendly
    descriptions of breast cancer clinical trials. The NAPBC has conducted
    a workshop to begin to address the broader issue of the need for
    integration of the numerous different sources of information about
    clinical trials, including trials sponsored by pharmaceutical
    companies, hospitals, CROs and the government. PDQ was identified as
    one of the more credible existing repositories and support will be
    provided to enhance this system to establish a central repository of
    user-friendly cancer clinical trials information. The NCI will serve as
    the lead agency for this activity in collaboration with the PHS OWH.
        Activity 4: New Approaches to Breast Cancer Imaging--$3.5
    million.--Ongoing efforts to explore the application of imaging
    technologies from the intelligence, defense and space fields to improve
    the early detection and diagnosis of breast cancer will be expanded and
    broadened to hasten the clinical application of newly developed and
    experimental breast imaging techniques and to foster collaborations
    between imaging scientists in other fields and investigators in
    molecular and cell biology, oncology, and radiology. The PHS OWH and
    NCI will jointly lead this activity.
        Activity 5: Federal Coordinating Committee on Breast Cancer
    Supplement Program--$3 million.--The Federal Coordinating Committee on
    Breast Cancer (FCCBC) is in a unique role to mobilize all federal
    agencies to address issues in breast cancer, to identify areas of
    overlap and gaps in our federal approach, and to identify areas in need
    of additional resources. Support will be provided to complete a
    searchable, Internet-accessible gateway to information about federal
    breast cancer programs. Using the searchable gateway of Federal breast
    cancer initiatives, the FCCBC will identify research, education, policy
    and service delivery gaps in current federal breast cancer efforts.
    Based on these gaps, support will be provided for a supplement program
    for DHHS agencies and other Federal departments for innovative, cross-
    cutting projects on breast cancer, including an emphasis on public/
    private sector partnerships. The PHS OWH will serve as the lead agency
    for this activity.
        Activity 6: Minority Breast Cancer Initiative--$2 million.--
    Collaborative activities will be supported to address research, service
    delivery, and education issues related to disparities in breast cancer
    incidence and mortality among women of color. Specifically, a workshop
    and related scientific reviews will be conducted to assess current
    knowledge of potential differences in tumor biology among minority
    groups and the potential implications for cancer prevention, control
    and treatment and to develop specific recommendations for future
    research initiatives. Additionally, education initiatives will be
    designed and conducted specifically targeting minority women to
    stimulate increased mammography screening, especially for older women
    and women at risk, utilizing public/private sector partnerships.
    Finally, a workshop will be conducted to identify barriers to the
    effective translation of intervention research and to provide specific
    recommendations for actions to address these barriers. The PHS OWH will
    serve as the lead agency for this activity in collaboration with the
    NCI.
        Activity 7: Communicating Risks and Benefits about Cancer and
    Cancer Control--$500,000.--Risk communication is becoming increasingly
    critical to efforts to responsibly inform the public and health care
    providers about the benefits and potential risks of various cancer
    treatments and preventive behaviors. Based on information from a
    literature review and market research a workshop will be conducted to
    formulate specific recommendations about how to better communicate
    risks in the context of cancer treatment and control, and to define
    future research needs in the area. The PHS OWH will serve as the lead
    agency for this activity in collaboration with the NCI, through its
    Office of Cancer Communications.
        Activity 8: Collaborative Research on Hormones, Hormone Metabolism
    and Breast Cancer--$500,000.--NCI, working in collaboration with the
    CDC, will address research needs identified at the NAPBC Etiology
    Working Group conference on hormones, hormone metabolism and breast
    cancer. Specifically, support will be provided for research to develop
    better (more sensitive, more specific, more reproducible, faster, less
    invasive, and less expensive) analytic methods for measuring steroid
    hormones and their metabolites in body fluids and tissues which could
    be applied to large scale epidemiologic studies and validation/
    reproductivity studies of new and existing assays. The NCI will serve
    as the lead for this activity in collaboration with the PHS OWH.
        Activity 9: Establishment of a Working Group on Environmental
    Clusters of Breast Cancer--$250,000.--A national working group
    involving Federal and state representatives, consumers, health care
    professionals and researchers will be convened to evaluate data
    concerning breast cancer clusters, to determine whether they are real
    or artifactual, to examine potential causative factors, and to develop
    mechanisms to further investigate the reported higher incidence of
    breast cancer in certain areas of the country. The PHS OWH will serve
    as the lead agency for this activity in collaboration with the NCI.
        Activity 10: Alternative Medicine and Breast Cancer Workshop--
    $200,000.--Increasingly, women are using alternative medicine
    approaches for treatment of breast cancer. A review of current
    literature and issues in the use of alternative medicine for breast
    cancer and a workshop on the use and effectiveness of alternative
    medicine interventions among breast cancer patients will be conducted.
    The workshop proceedings will provide the foundation for identifying
    further education and research initiatives. The PHS OWH will serve as
    the lead agency for this activity in collaboration with the NCI and the
    NIH Office of Alternative Medicine.
        Activity 11: Adiposity, Physical Activity and Breast Cancer
    Workshop--$150,000.--A workshop will be supported to set a research
    agenda on the role of diet, obesity, and physical activity in breast
    cancer etiology and recurrence. A special focus will be placed on Asian
    immigrant and Asian American women in considering the basis for
    variations. The PHS OWH will serve as the lead agency for this activity
    in collaboration with the NCI.
        Activity 12: Prophylactic Mastectomy and Prevention of Breast
    Cancer--$150,000.--A research workshop will be supported to review
    available data on the effectiveness of prophylactic mastectomy in the
    prevention of breast cancer and potential policy implications. The
    results of this workshop may lead to future research initiatives and
    public and health care provider education strategies. The NCI will
    serve as the lead agency for this activity in collaboration with the
    PHS OWH.
        Activity 13: Breast Cancer Risk in Female Flight Attendants--
    $250,000.--Ongoing studies at the National Institute of Occupational
    Safety and Health (NIOSH) of environmental exposures, including
    exposures to cosmic ionizing radiation, in airplane cabins and
    disruption of circadian rhythms that may alter endogenous hormone
    levels, thereby influencing breast cancer risk in populations with high
    exposures will be supplemented. This supplement will assess increased
    breast cancer risk among female flight attendants to provide the
    foundation for follow up studies that will evaluate sources of risk and
    the impact of certain exposures on hormone levels, providing important
    clues about potential increased risk of breast cancer among flight
    attendants, female frequent fliers, radiation workers, and women who
    work nights or rotating shifts. Funds will be transferred to NIOSH for
    conduct of the study.
        Activity 14: Reproductive Status, Hormone Levels, and Breast Cancer
    Conference--$250,000.--Significant changes in reproductive patterns,
    such as delaying childbirth and having fewer children, as well as
    increasing use of hormone replacement therapy among the growing elderly
    population of women in the United States is raising a large number of
    unanswered questions about reproductive status, hormone levels and
    breast cancer risk. These will be addressed at a research conference to
    assess what is known about the role of these factors in the development
    of breast cancer and the changing patterns of breast cancer incidence
    and mortality in the United States. The PHS OWH will serve as the lead
    agency for this activity in collaboration with the NCI.
        Activity 15: Silicone Breast Implant Rupture Study--$200,000.--
    Ongoing collaborative studies by the NCI and Food and Drug
    Administration (FDA) are addressing problems of symptomatic rupture of
    silicone breast implants often used in reconstructive surgery for
    breast cancer patients. Rupture of silicone gel breast implants may be
    one of the most prevalent complications associated with breast
    implants, however, current prevalence estimates vary considerably
    across studies. This supplement will estimate the level of symptomatic
    rupture which has resulted in explant, rupture of implants explanted
    for other reasons, and silent rupture of implants which may have
    occurred. This study will allow more accurate determination of the
    total rupture rate of silicone breast implants, both symptomatic and
    silent. NCI will be the lead agency for this study in collaboration
    with the FDA and PHS OWH.
        Activity 16: Breast Cancer Survivorship Initiatives--$250,000.--The
    new NCI Of lice of Cancer Survivorship has held a series of planning
    activities and workshops to identify and prioritize future initiatives
    on the medical, psychosocial and economic issues for cancer survivors
    and their families. Support will be provided to further explore
    specific medical and psychosocial aspects of breast cancer survivorship
    and potential initiatives to address identified needs. The NCI will
    serve as the lead agency for this activity in collaboration with the
    PHS OWH.
        Question. Are there priority areas beyond the six currently
    identified by the Steering Committee that should be pursued in the
    future?
        Answer. Among the activities proposed by the OWH and NCI to be
    supported with fiscal year 1997 funds are a number of critical
    priorities including: (1) minority health issues and breast cancer,
    including differences in tumor biology and special issues in prevention
    and education; (2) genetic susceptibility to breast cancer, and (3)
    continued refinement and development of new imaging technologies and
    treatment strategies.
        Question. How much does your budget recommend spending on the
    Action Plan's Activities in fiscal year 1998?
        Answer. A specific amount has not been earmarked for the Plan for
    fiscal year 1998. I have asked the NAPBC Steering Committee to bring
    the Plan into the same budget cycle as the rest of the Department, so
    that funding requirements can be coordinated with the DHHS and the
    Congressional appropriations process. The Committee is currently in the
    process of doing this, and will forward their request for fiscal year
    1998 to me by this summer.
        Question. How much was expended on the Plan's activities in Fiscal
    year 1996 and how was it spent?
        Answer. The Plan spent $10 million in fiscal year 1996. These funds
    were spent on Working Group activities, highlights of which include:
      --Funding the second year of the NAPBC grant program ($3.5M).
      --Funding a support contract that will ensure the availability of
            needed technical and logistical support for Program activities
            ($3.5M).
      --Funding a series of Working Group initiatives ($2.8M), including,
            for example:
      --Developing an educational curriculum on hereditary susceptibility
            for health care providers.
      --Evaluating the need for and beginning the establishment of a tissue
            bank for research.
      --Conducting a workshop on Hormones, Hormone Metabolism, Environment
            and Breast Cancer and initiating development of meeting
            proceedings.
      --Initiating development of a breast cancer core questionnaire that
            will provide consistent data and enable meta analysis of survey
            data, thus providing sufficient power to address some of
            today's toughest questions about the causes of breast cancer.
      --Additionally, the NCI provided support for research activities they
            identified to be related to Plan priorities ($4.9M)
        Question. How much do you estimate spending in fiscal year 1997 and
    for what purpose?
        Answer. Of the total $14.75 million available through the fiscal
    year 1997 appropriation, $14 million will be spent for the 16 breast
    cancer research projects identified by NCI and the OWH and for
    continuing obligations of the NCI. We also anticipate that we will
    spend approximately $750 thousand of fiscal year 1997 funds on
    coordination of Plan activities conducted this year.
                      medicaid coverage of attendant care
        Question. Under Medicaid, all states are mandated to provide
    institutional nursing home care for eligible persons, but community-
    based attendant services are only a state optional service. Would you
    support legislation to require all states to develop attendant service
    programs for disabled persons of all ages as alternatives to nursing
    homes?
        Answer. HHS believes that attendant service programs might be able
    to help reduce Medicaid costs. The Department is currently examining
    this policy option, and there will be a recommendation in the future.
        Question. Has your Department developed estimates on whether cost
    savings could be achieved by getting people out of nursing homes and
    into home-based care?
        Answer. No, HHS has not developed a cost savings estimate for this
    policy.
        Question. Would you be willing to create a Personal Attendant
    Services Task Force, consisting of members from State Planning
    councils, Independent Living Councils, and Aging councils, to look at
    such issues as financing and eligibility standards?
        Answer. HHS is currently considering attendant service programs as
    a policy option. The Robert Wood Johnson Foundation is funding a
    demonstration program that should be operational in January 1998. The
    Department is looking forward to seeing the results of this project for
    purposes estimating the cost effectiveness of attendant services.
                    january 30 letter on medicare proposals
        Question. On January 30th, I wrote you a letter encouraging your
    support for carving out graduate medical education payments to Medicare
    managed care providers and for making provider sponsored organizations
    (PSO's) eligible to contract with Medicare for managed care services.
    Both of these proposals were brought to my attention during meetings
    with health care providers in Pennsylvania. Although you have not yet
    responded to my letter, I note that the President's budget proposes
    carving out graduate medical education. Would you clarify the
    President's proposal in this area?
        Answer. Under the President's proposal, payments for IME, GME, and
    DSH would be carved out of the local payment rates over a two-year
    period (50 percent in 1998; 100 percent thereafter) and provided
    directly to teaching and disproportionate share hospitals for managed
    care enrollees and to entities with recognized teaching programs.
        This policy would guarantee that payments designed to compensate
    hospitals for conducting teaching programs and for caring for the
    neediest citizens are made directly to such hospitals for managed care
    enrollees. The carve out does not represent a reduction in payment for
    managed care enrollees.
      --Managed care plans can consider these funds available to such
            hospitals when they negotiate their rates.
      --A current law provision that requires non-contracting hospitals to
            accept the Medicare DRG amount as payment in-full would be
            modified to require non-contracting hospitals to accept the DRG
            amount, minus the IME/GME/DSH carve-out, as payment in-full.
        Question. What have you done with regard to provider sponsored
    organization?
        Answer. Under the Administration's proposal, Medicare beneficiaries
    could enroll in a new type of managed care plan, provider sponsored
    organizations (PSOs). The 1995 Balanced Budget Act also permitted
    Medicare beneficiaries to enroll in PSOs.
        PSO's would be held to all of the same standards as existing HMO's
    related to quality, access, marketing, beneficiary liability, benefits,
    and appeals and grievances.
        Because of differences between the PSOs' and HMOs' delivery
    systems, PSOs would be subject to special standards in two areas--(1)
    fiscal soundness and solvency and (2) private enrollment requirements
    (e.g., 50/50 rule and minimum private enrollment requirements).
        Unlike HMOs which provide services through contracts, PSOs would
    provide a substantial proportion of services directly through their own
    physician and hospitals. As a result, both the Congress' balanced
    budget bill and the Administration's proposal would subject PSOs to
    special standards for fiscal soundness and solvency.
        The Administration's proposal would also permit PSOs to meet the
    50/50 rule and the minimum private enrollment requirements in a
    different manner than HMOs.
      --The PSO could ``count'' as commercial enrollees those individuals
            for whom the PSO was at substantial financial risk. For
            example, if the physician group of the PSO contracts with
            another HMO and receives capitated payments from that HMO on
            behalf of the HMO's enrollees, those individuals would count
            towards meeting the PSO's 50/50 requirement or the minimum
            private enrollment requirement for the PSO.
        The Administration's bill would provide federal pre-emption of
    State licensing requirements in limited circumstances.
      --Prior to approval of a State's certification and monitoring program
            for PSOs, the Medicare program would not require PSOs to be
            state licensed in order to obtain a Medicare contract.
      --State licensing requirements would be preempted unless the State's
            requirements were identical to federal contracting standards.
      --However, once the State has a certification and monitoring program
            approved by the Secretary based on its standards being
            substantially similar to federal standards, PSOs would be
            required to obtain a license from the State.
      --After 1999, the State could impose more stringent standards, but
            these standards would have to be approved by the Secretary.
                   avoiding micro management of managed care
        Question. There are a growing number of bills pending in the 105th
    Congress aimed at resolving specific problems in the rapidly growing
    field of managed health care, including: ``drive through''
    mastectomies; gag rules; emergency room care; and access to
    specialists. Last Congress, we enacted legislation requiring health
    plans to cover a minimum stay of 48-hours following child birth. But is
    this the best means of insuring access to quality health care for
    managed care participants?
        Answer. The HCFA Office of Managed Care has analyzed many of the
    issues you raise in your question, including ``drive through''
    mastectomies, gag rules, and coverage of emergency room visits. As a
    result of our attention to ensuring appropriate access to quality
    health care services for all Medicare beneficiaries, we have recently
    sent several letters interpreting this policy to both Medicare managed
    care plans and to fee-for-service contractors. We have reiterated that
    the law requires Medicare managed care contractors to provide their
    Medicare enrollees with the full range of services that are covered
    under Medicare and available to fee-for-service Medicare beneficiaries
    residing in the geographic area covered by the plan. Medicare managed
    care plans have been instructed that they may never establish ``gag
    rules'' that might prevent providers from advising beneficiaries of
    treatment options. And, in the most recent policy interpretation, HCFA
    sent a letter to all Medicare managed care plans, and to fee-for-
    service carriers and intermediaries, advising these entities that it is
    never appropriate for a provider--whether it be a hospital, and HMO or
    a physician, to adopt arbitrary coverage policies, disease management
    protocols, or utilization review criteria that do not take into account
    individual patient circumstances. All Medicare providers must make
    decisions about the coverage of health care services using an
    objective, evidence-based process that addresses the needs of the
    beneficiary.
        Establishing specific coverage and benefit mandates by legislation
    should not be necessary when all providers are abiding by these
    guidelines. In fact, coverage requirements may not be appropriate in
    all circumstances, and in some cases it may not be in the beneficiaries
    best interest to mandate a certain minimum length of stay. Optimally,
    treatment decisions should be made by physicians in consultation with
    beneficiaries, and without interference from a third party
    administrator. Assuring that Medicare managed care providers have the
    freedom to provide enrollees with all medically necessary covered
    benefits and services will continue to be a focus of HCFA's routine
    oversight of contracting managed care organizations.
        Question. What are your views on whether Congress should continue
    to micro-managed health care coverage problem by problem, or would it
    be better to take a ``macro'' management approach that sets broad
    standards, such as: access to specialty providers; grievance
    procedures; and disclosure of financial arrangements between health
    plans and providers?
        Answer. Please see previous response.
                              alternative medicine
        Question. Madam Secretary, I wrote you on February 14th concerning
    the need in our country to develop a comprehensive clinical research
    database on alternative and complementary medical therapies with great
    numbers of Americans reporting the use of alternative and complementary
    therapies it is imperative that the federal government incorporate
    research and information dissemination on such practices with its
    traditional medical research activities. The letter requested your
    Department to undertake two reviews:
      --(1) Review, by agency, the level and type of federal research on
            alternative and complementary therapies that has, and is, being
            supported by the federal government; and
      --(2) Review the existing clinical databases that include alternative
            and complementary therapies, and provide an assessment to the
            Committee of the time and cost required to consolidate into a
            central database all relevant clinical literature on
            alternative and complementary medicine.
        What is the status of this review?
        Answer. I have recently responded in writing to your letter of
    February 14th. The essence of the letter is as follows:
        The review you request is a large undertaking; yet there are
    activities that have begun in some of these areas. The Offices of
    Alternative Medicine and Dietary Supplements at the National Institutes
    of Health (NIH) have already begun development of three databases.
    These databases, when completed, will cover the majority of the
    research published in the world literature, and will encompass research
    supported by the NIH and other Federal agencies. The databases and the
    plans for their development are as outlined:
      --(1) The Office of Alternative Medicine (OAM) is developing a
            comprehensive compilation of NIH funded research in
            complementary and alternative medicine (CAM). A database of
            research being supported by all Federal agencies and
            departments requires a search by hand of all relevant data
            sources since the available keywords are usually not useful for
            identifying projects in complementary and alternative medicine.
            This search has been done for fiscal year 1996 and is being
            expanded to comprise the last three years of NIH-funding. This
            information can be completed by NIH by the time of the August
            1, 1997 interim report that you request. A plan will be
            developed and presented to expand this effort to other Health
            and Human Services agencies. In addition, other agencies, like
            the National Aeronautics and Space Administration, the Central
            Intelligence Agency, and the Department of Veteran's Affairs
            may have contributions to the database.
      --(2) A bibliographic database of scientific literature covering all
            national and international publications has been started by the
            OAM with over 60,000 citations already entered. Construction of
            a worldwide database of scientific literature is a major
            undertaking but is being aggressively pursued. The OAM has
            reviewed and characterized existing bibliographic databases in
            alternative and complementary medicine. There are 70 such
            databases and about two-thirds are international in scope,
            providing worldwide representation. Several important
            impediments have emerged, including the use of multiple
            languages, diversity in the quality of studies, lack of
            uniformity of the abstracts provided, and the incorporation of
            proprietary data. Currently, the best strategy seems to be to
            create a ``database of databases'' allowing the user to move
            seamlessly across the existing databases using common search
            terms and technology. This approach poses challenges, but is an
            option which is compatible with the longer term strategy of
            translating and evaluating selected scientific papers. The goal
            of this work is to create a valid source of information,
            accessible to the public, to health care providers, and to
            researchers through the Internet. The OAM is working closely
            with the National Library of Medicine on this project. An
            update regarding this strategic approach will be provided in
            the interim report.
      --(3) The Office of Dietary Supplements (ODS) is working
            collaboratively with the OAM and the Department of Agriculture
            as well as with the private sector in developing two databases
            on botanicals and dietary supplements, one of published
            research and one of ongoing Federal research. The ODS expects
            to have an initial version of available information regarding
            Federal research on the Internet this spring. This activity
            responds to a mandate in the Dietary Supplements Health and
            Education Act (DSHEA). The ODS has considered the addition of
            research being supported by other agencies. Currently there are
            scientists from the Food and Drug Administration and the
            Centers for Disease Control and Prevention working on a detail
            to the ODS to implement this project. Considerable work
            remains, particularly in regard to the foreign literature. The
            bibliographic database is progressing and an early version
            should be available on the Internet by summer. Information
            about the status of these databases can be provided for the
            interim report and strategies for a more comprehensive
            databases with rough estimates of the costs, and timelines as
            well as the positive and negative aspects of the project can be
            provided for the final report on January 1, 1998.
      --(4) There is currently no central entity coordinating all
            complementary and alternative medicine activities across the
            Federal government. NIH is the only Federal agency having a
            specific mandate to address these areas. NIH focuses its
            activities on biomedical research and related information
            dissemination. It has provided assistance, however, in
            coordinating joint activities with the Agency for Health Care
            Policy and Research, Health Care Financing Administration, the
            Centers for Disease Control and Prevention, state licensing
            boards, some sections of the Department of Defense, NASA, VA,
            CIA and the Department of Agriculture in other areas pertinent
            to CAM practice such as medical education, licensure,
            reimbursement and product regulation.
        Question. Can this committee expect to have an interim report on
    the clinical database review by August 1st?
        Answer. An interim report can be compiled by August 1, 1997. It
    will present information on: Federal research being conducted at the
    NIH on CAM for the years 1993-1996 and the methods of contact with
    other agencies; a plan for collecting information from other Federal
    agencies on their research support of CAM; a summary of the status of
    two databases on dietary supplements in the Federal government and
    information on the types of worldwide databases regarding published
    research on CAM.
        By the final report on January 1, 1998, we expect to provide: an
    estimate of the cost and of the timelines required to gather
    information from other Federal agencies on their CAM research; a
    description of several strategies for compiling a worldwide database of
    published research on CAM with rough estimates of the costs and
    timelines as well as the positive and negative aspects of the project;
    a timeline for a formal needs assessment of an accessible worldwide
    research database; and, a demonstration of the use of databases on
    dietary supplements.
        Question. Madam Secretary, given the findings reported in the
    January 28, 1993 issue of The New England Journal of Medicine that 34
    percent of the people surveyed in a national sample of adults had used
    at lease one unconventional therapy in the previous year, what
    justification is there for cutting the budget of the Office of
    Alternative Medicine at NIH by $4.5 million?
        Answer. Decisions on the allocation of resources within the budget
    of the Office of the NIH Director were determined solely by the NIH
    Director within the context of the overall NIH budget. It is my
    understanding that the fiscal year 1998 and other outyear costs of
    clinical studies initiated with the increases provided in fiscal year
    1997 for the OAM will be picked up by the various Institutes and
    Centers where the studies will actually be located. I know that the
    Committee has a strong interest in this field and that the Committee
    plans to discuss this issue further with Dr. Varmus and his staff.
        Question. What will be cut in order to absorb a reduction of 40
    percent?
        Answer. Primarily, funds for cooperative agreements for clinical
    studies would be reduced by $4.1 million, or by about 50 percent,
    within the OAM budget compared to fiscal year 1997, with smaller
    reductions in the OAM support for evaluation and liaison activities.
    However, as discussed above, this reduction represents the fact that
    the outyear costs of CAM research awards initiated with the fiscal year
    1997 increase will be assumed by the Institutes and Centers where the
    studies will actually be located. The remaining $7.5 million included
    in the fiscal year 1998 request for OMB would be used for
    administrative costs, the clearinghouse activity, for initiating a
    database, and for seed money to further stimulate CAM research within
    the Institutes and Centers.
        Question. How are the funds being used in fiscal year 1997?
        Answer. A summary of fiscal year 1997 funding is shown on the table
    below:

    National Institutes of Health--fiscal year 1997 estimated funding for
    the Office of Alternative Medicine

            Activity                                               Thousands
    Complementary and alternative medicine centers and grant cofunding$8,247
    Clearing house and public information.............................   550
    Database and evaluation...........................................   350
    International and professional liaison............................   150
    Intramural research, research training, program support........... 2,629
    Research development and investigation............................    68
                            -----------------------------------------------------------------
                            ________________________________________________
          Total.......................................................11,994
                                 pain research
        Question. People with chronic, debilitating cancer pain often are
    shortchanged in getting the pain medicines they need to cope with their
    illness. Doctors may not be getting the information they need to make
    sure that their patients receive enough medication to substantially
    alleviate their pain. The NIH recently created a new office in pain
    research and the Agency for Health Care Policy Research has been
    conducting studies on how well doctors are informed about pain
    management. With millions of individuals suffering from some level of
    pain, I believe that this is an area that deserves substantially more
    attention and resources. Madam Secretary, what can be done to improve
    our research efforts on pain and to better the information physicians
    receive about treatment?
        Answer. A number of steps have been taken to address the issues you
    raise. The Agency for Health Care Policy and Research has issued a
    series of clinical practice guidelines on pain management--for cancer
    pain, acute post-operative pain and low back pain. These have been
    widely distributed and were publicized in the news media at the time of
    their publication. The World Health Organization has also published
    cancer pain guidelines and similar recommendations on pain management
    have been developed and distributed by various institutes at the
    National Institutes of Health (NIH) as well as professional
    organizations such as the American Pain Society. In addition, NIH uses
    consensus development conferences and other forums to educate providers
    and members of the public on a variety of health issues, including the
    management of chronic pain conditions. It is important to note that
    part of the resistance to appropriate management of pain comes from
    many pain patients themselves, who either believe that it is better to
    be stoical in the face of pain or else fear--mistakenly--that they will
    become addicted.
        In new efforts to enhance research and education on pain, NIH
    Director Harold Varmus has established an NIH Pain Research Consortium
    chaired by the Directors of the National Institute of Neurological
    Disorders and Stroke and the National Institute of Dental Research. The
    Consortium is made up of 21 Institutes and Offices at the NIH and has
    been charged to provide coordination of pain research activities across
    NIH, to promote collaborations, and to ensure that the results of pain
    research are widely communicated. This fall, the Consortium is planning
    a major workshop on New Directions in Pain Research that will bring
    together pain research investigators, and leaders in other fields of
    neuroscience or in related areas such as genetics and immunology.
    Representatives of patient groups will be invited as well.
        Question. Several doctors have been investigated by their state
    medical boards, prosecuted, and even had their licenses revoked because
    they believed that their patients needed higher doses of medicines than
    what is considered normal. California, Florida, and North Carolina have
    issued new practitioner guidelines on pain management. Madam Secretary,
    is it time for your Department to think about developing a
    comprehensive recommendation on pain management for providers
    nationwide?
        Answer. The management of pain is generally handled on a case-by-
    case basis. The health care provider must take into consideration the
    characteristics of the patient--age, health status, use of other
    medications, side effects and so on. The Department fully supports the
    clinical practice guidelines published by the Agency for Health Care
    Policy and Research on cancer pain, acute post-operative pain and low
    back pain as well as recommendations from consensus development
    conferences at the National Institutes of Health. While the Department
    has no jurisdiction over state medical or dental boards, we can inform
    physicians in clinical practice through dissemination of research
    results, promotion of research training, and distribution of
    educational materials regarding best practices. Ultimately, this could
    lead to a broadening of the curriculums of health professional schools
    to include more comprehensive programs on pain problems and their
    management. I expect that the activities of the newly formed NIH Pain
    Research Consortium, as well as those of individual agencies in the
    Department, can be instrumental in focusing attention on management of
    chronic pain problems and in this way encourage adoption of appropriate
    guidelines nationwide.
                     medicare payment safeguard activities
        Question. As you know, Medicare contractor payment safeguard
    activities are sound investments for the federal government because
    they help to detect and reduce fraud and abuse in the Medicare program.
    Last year, the Kassebaum/Kennedy bill included a provision that moved
    the payment safeguard activities from the appropriations process to a
    mandatory program--to ensure an adequate and stable funding source. I
    am concerned by reports that although he Office of Management and
    Budget released the full $440 million in fiscal year 1997 these
    important activities, HCFA has not subsequently disbursed the full
    amount to the Medicare contractors. Can you please explain why HCFA has
    not released the full funding and when it intends to do so?
        Answer. As of March 26 1997, approximately $425.4 million of the
    total $440.0 million payment safeguard funds was released to the
    Medicare contractors. The remaining undistributed balance--$14.6
    million--supports specific program integrity special projects, and is
    released as the contractors complete this work. We believe that
    providing this funding at the time of work completion reflects our
    unwaivering commitment to fiscal responsibility.
        Question. Please provide an accounting of exactly how the money is
    being spent region by region.
        Answer. The regional breakout of the payment safeguard funding is
    as follows:

    Regional breakout of the payment safeguard funding

            HCFA region                                          In millions
    Boston............................................................ $71.5
    New York..........................................................  42.4
    Philadelphia......................................................  38.7
    Atlanta...........................................................  67.4
    Chicago...........................................................  79.9
    Dallas............................................................  37.7
    Kansas City.......................................................  31.5
    Denver............................................................   6.6
    San Francisco.....................................................  35.2
    Seattle...........................................................   7.9
    RRB/BCA...........................................................   5.6
    Funding in transit................................................   1.0
    Undistributed projects............................................  14.6
                            -----------------------------------------------------------------
                            ________________________________________________
          Total....................................................... 440.0
                         ventilator rehabilitation unit
        The Health Care Financing Administration is currently providing
    demonstration funding to Temple University Hospital in Philadelphia for
    the hospital's Ventilator Rehabilitation Unit (VRU). As the original
    sponsor of this demonstration, I am delighted that the project is, by
    every measure an unqualified success: it saves lives and money.
        The VRU's innovative methods for weaning ventilator-dependent
    patients have had remarkable results: over 79 percent of patients, who
    previously would have been relegated to long-term care facilities, go
    home and are able to lead active, productive lives. Further, health
    care dollars are saved because patients do not remain in long-term care
    facilities for extended periods of time. The funding for this
    demonstration, regrettably, expires on June 30, 1997. Temple, HCFA,
    OMB, and the Commonwealth of Pennsylvania have been engaged in an
    intensive, but ultimately unproductive, effort to find a permanent
    funding source for the VRU. It is my hope that you will work with us to
    resolve this funding dilemma. I have some questions and would very much
    appreciate your submitting answers for the record.
        Question. Have you had the opportunity to review this project?
        Answer. As part of the original four-site demonstration project,
    HCFA contracted with Lewin-VHI to conduct an evaluation of the
    Ventilator Dependent Unit (VDU) (also known as Ventilator
    Rehabilitation Unit (VRU) Demonstration. The report was finalized in
    April of 1996. With regard to effects on Medicare costs, the report
    found that:
      --Mean Medicare and total expenditures for the VDU cases during their
            hospital stay was substantially higher than for the non-VDU
            cases. This was largely due to the longer lengths of stay for
            VDU patients; expenditures per day for VDU cases were lower
            than for non-VDU cases.
        More generally, based on the evaluation's analysis of costs,
    outcome and other factors, the report recommended that:
      --National implementation with the demonstration's most effective
            controls on admission (following the Temple model) would have
            increased Medicare expenditures in 1994 by about $0.4 billion,
            while implementation with ineffective controls on admission
            would have increased Medicare expenditures by about $1.25.
      --The findings from this study provide little support for national
            implementation of TEFRA cost-reimbursement for VDU-type
            rehabilitation units. Given admission findings, it is unlikely
            that sufficiently effective means can be found for limiting
            admission to VDU's to patients who will benefit from this type
            of care.
      --Further, given outcome findings, it is likely that Medicare and
            total expenditures for patients treated in many new units would
            be much higher than under PPS, and that they would benefit
            little from that type of care.
        Based on these and other interim findings, HCFA determined that it
    would not continue this demonstration project, and would not recommend
    that the VDU model be developed as part of the national Medicare
    program.
        Question. Would you consider whether the VDU at Temple could be
    designated a Center of Excellence under the expanded definition
    contained in the Administration's budget proposal?
        Answer. The goals of the Medicare Center of Excellence projects are
    not consistent with the current design of the VDU demonstration project
    at Temple University. The Center of Excellence concept, as it is
    described in the Administration's budget, aims at realizing savings to
    Medicare while improving quality of care through a bundled payment
    arrangement and closer coordination of care across providers for
    certain complex procedures. Since the VDU demonstration, in essence,
    permits a separate--rather than bundled--payment for VDU services, the
    Temple VDU model is different than the Center of Excellence concept.
    Therefore, it does not appear to be consistent with the goals of
    expanded Center of Excellence projects to include continued funding for
    the Temple VDU.
        Question. Neither a SNF nor a Rehab unit designation appears
    appropriate for the VRU. Could your staff suggest any further funding
    alternative?
        Answer. When HCFA and HHS staff originally reviewed Temple
    University's request to extend the VDU demonstration to June 30, 1997,
    it was with the understanding that this 3 year extension was to allow
    the Temple VDU to continue uninterrupted operations while integration
    with Temple's existing hospital-based skilled nursing facility was
    accomplished. At the time of Temple's request for this 3 year extension
    (in 1995), it anticipated that this 3 year extension would be
    sufficient to obtain State SNF certification. HCFA staff continues to
    believe that integration with the existing Temple skilled nursing
    facility is the most appropriate long term funding option for the VDU.
        Question. Would you consider extending the demonstration authority
    while a permanent funding source is sought?
        Answer. The difficulty with this suggestion is that the previous
    extension to June 30, 1997, was granted with the expectation that this
    additional time would be used to secure permanent funding through
    integration with Temple's SNF facility. Given the findings of the
    evaluation of the overall demonstration, particularly the fact that the
    Temple VRU project represents an additional cost to the Medicare
    program above that which would be expected under non-demonstration
    rules, it is difficult to justify further continued funding through
    demonstration authority. Typically, HCFA's demonstration authority is
    reserved for short-term policy and/or operational policy test projects
    which are anticipated to generate savings to the program, or at least
    be budget neutral while accomplishing other program improvements and
    innovations.
        Question. Would you and your staff continue to work with my office
    to help resolve this issue for Temple?
        Answer. We will continue to work with your office, recognizing that
    our primary concern must always be with the value of an arrangement to
    Medicare beneficiaries and to the program overall.
                          hcfa/medicare coverage/lvrs
        Question. Given this Committee's mandate for you to submit a report
    by January 1, 1997 describing a method and schedule to provide Medicare
    coverage and reimbursement for lung reduction volume surgery, and the
    multitude of favorable peer reviewed data published about the procedure
    since HCFA's January 1, 1996 non-coverage decision, please provide us
    with a preview of the report you intend to submit to Congress by April
    1, 1997 regarding the timing of coverage and reimbursement for lung
    volume reduction surgery.
        Answer. The report will address two major issues. The first is a
    review of recent published articles on LVRS. The second is the
    structure of the NHLBI/HCFA clinical study and how new Medicare
    coverage decisions will occur as new data become available from that
    study. Our initial conclusion from the published articles, which will
    require AHCPR assistance and review, is that current data support
    Medicare coverage only within the clinical study as is reflected in
    current policy. Many questions concerning outcomes and risks remain
    unanswered. The second issue will be concluded, as will the report,
    when the study protocol is completed in May. This will determine how
    the surgery will be provided in the study. Most importantly, if at any
    point in the study there is conclusive proof of benefit, Medicare will
    begin expanding coverage immediately.
             medicare: inadequate federal reimbursement for claims
        Question. I support increasing efficiencies, but I'm concerned
    about your proposed reductions to the Medicare contractor claims
    processing budget. You propose large cuts in fiscal year 1998 for
    claims processing unit costs, about a 15 percent cut for Part A and 18
    percent cut for Part B. Considering the number of contractors that have
    exited the program over the past year--several, including Aetna and
    Many Blues Plans--and have complained about inadequate Federal
    reimbursement for claims processing activities, do you agree that
    funding for claims processing activities should at the very least,
    remain stable, to prevent many more contractors from dropping out the
    program which could hurt beneficiaries who rely on the stability of the
    program?
        Answer. Providing a stable level of funding for the Medicare
    contractor claims processing function is an essential element of this
    year's request. While claims processing costs have decreased $15.3
    million from the fiscal year 1997 appropriation level, we expect that
    an increase in managed care enrollment will continue to slow the growth
    associated with fee-for-service claims processing. Moreover, HCFA
    expects that continued increases in operational efficiencies will allow
    Medicare contractors to process claims without interruption.
        In the event of a contractor non-renewal, HCFA staff will work
    closely with each departing contractor and each replacement contractor
    to assure a smooth transition of Medicare workload. Medicare
    beneficiaries and providers in the affected States will not experience
    any disruption in service.
                       medicare transaction system (mts)
        Question. In your congressional justification, you state that the
    ``continuation of the Medicare Transaction System (MTS) is a wise
    decision.'' It is my understanding that many concerns have been raised
    by the Office of Management and Budget and the General Accounting
    Office about your management of MTS. Additionally, Bruce Vladeck was
    recently quoted in BNA as stating that MTS implementation probably
    would be delayed as a result of under funding. Can you please tell me
    how long a delay you expect as well as the expected total cost of MTS
    and how you are addressing concerns of HCFA management of MTS?
        Answer. We are currently reassessing the MTS design in order to
    mitigate risk, conform to the budget pressures of fiscal year 1998 and
    beyond and the constantly changing Medicare operating environment.
    Currently we are in the process of updating cost estimates based on the
    latest information and when the results of that are complete, we would
    like the opportunity to share them with you.
        OMB, HHS and HCFA have engaged in numerous discussions concerning
    MTS development and implementation. Both OMB and HHS agree with HCFA
    that significant changes need to be made in the operation and
    management of the Medicare program and that improvements to the
    program's information and processing infrastructure are necessary.
    Although we may sometimes disagree on methods, there is no argument on
    the goal. HCFA continues to work with OMB to develop an implementation
    strategy that balances risk and cost factors.
         medicare: displaced employees from claims processor's offices
        Question. In light of the increasing number of carriers and
    intermediaries who decided to scale back or end their contractual
    relationships with HCFA as a claims processor, what efforts will HCFA
    undertake to ensure that employees who may be displaced by such
    activities are given an opportunity to work for a new contractor who
    may enter that particular service area?
        It seems to me that one of the criteria that HCFA should consider
    while making a decision is the impact that the new provider will have
    on these employees' jobs. The valuable services they provide should be
    protected as much as possible. The long-term dedication these people
    have demonstrated should be honored, with attention and care given to
    their futures. Lastly, it would be advantageous to utilize these
    employees because of their knowledge of the Medicare program and the
    low training costs which would be required rather than having to train
    an entirely new workforce while HCFA continues to decrease its cost per
    claims reimbursement.
        Answer. HCFA recognizes the value these employees have brought to
    the Medicare program over the years. We work with the contractor
    leaving the area/program to identify those employees dedicated to
    Medicare activities, who are losing their jobs. We encourage the
    incoming contractor to offer comparable jobs to the displaced
    employees. Where the incoming contractor is not opening an office in
    the affected area, we work with the contractor leaving to find new
    employment opportunities for the displaced Medicare employees.
        We believe that these efforts are good for the employees and for
    the economy of the local community.
                                  hepatitis c
        Question. Last year the Appropriations Committee Report
    accompanying the Labor HHS bill noted the Centers for Disease Control
    and Prevention's (CDC) recent estimate that 3.9 million people are
    infected with Hepatitis C. The National Institute of Allergy and
    Infectious Diseases estimates that there are 150,000 new cases of acute
    Hepatitis C per year, resulting in 8,000-10,000 deaths per year.
    Despite these alarming estimates, I am astonished to learn that acute
    and chronic Hepatitis C specifically is not a reportable disease. Why
    isn't Hepatitis C specifically a reportable disease?
        Answer. Acute hepatitis C is a reportable disease in all U.S.
    States and Territories. Chronic diseases are not reportable in any of
    the U.S. States and Territories primarily because available diagnostic
    tests for hepatitis C do not distinguish between acute and chronic or
    past infection.
        The main purpose of acute disease reporting is to monitor trends in
    the rate of newly acquired disease and changes in risk group specific
    transmission patterns in order to determine where prevention measures
    should be targeted and to evaluate their impact. The cited estimates on
    the acute disease burden are derived from studies conducted by CDC,
    which has been actively involved in the surveillance for acute
    hepatitis C (and non-A, non-B hepatitis) since the late 1970s. The
    number of newly acquired (acute) infections with hepatitis C virus
    (HCV) has declined from 180,000 in the mid 1980s to 30,000 in 1995 for
    an average annual number of 120,000. Contributing to this overall
    decline is a decrease in transfusion-associated infections, most of
    which occurred prior to 1911 and a decrease in injection drug use-
    associated infections, most of which occurred since 1911.
        Question. Without valid numbers, how can the prevalence and
    severity of hepatitis C be analyzed and how can resources be directed
    to persons most in need?
        Answer. Reliable data regarding the prevalence of HCV infection is
    available from the National Health and Nutrition Survey conducted by
    CDC from 1988-1994. Based on this survey, we are able to examine both
    the prevalence of HCV infection, which in the United States is 1.8
    percent, an estimated 3.9 million infected persons, and, thus,
    determine the relative severity of the disease. The prevalence of
    infection was higher in males than in females, and higher in African
    Americans than in Caucasians. The highest rates of HCV infection were
    found in adults aged 30-49 years. In addition, two population-based
    studies of patients with chronic liver disease conducted by CDC found
    that 40 percent to 60 percent were associated with HCV, with the most
    severe disease in patients with combined HCV and alcohol-related liver
    disease.
        Though problems exist in the full reporting of Hepatitis C, data
    captured in the National Health and Nutrition Survey has provided
    meaningful information with regard to the populations most at risk. As
    a result, we have been able to address some of the many concerns and
    needs of these vulnerable populations based on the resources available.
        Question. What is being done to ensure full reporting of chronic
    and acute hepatitis C?
        Answer. Complete and reliable reporting of patients with acute
    hepatitis C is limited because: (1) persons with acute HCV infection
    are usually asymptomatic and only 25 percent to 30 percent will have
    signs and symptoms of illness and seek medical attention; (2) available
    diagnostic tests for hepatitis C do not distinguish between acute and
    chronic or past infection; (3) up to 20 percent of patients with
    symptomatic acute hepatitis C cases will have a negative diagnostic
    test for hepatitis C when they initially see their doctor; and (4)
    state and local health departments lack the resources to carry out
    surveillance for this disease. Thus, CDC has relied on a sentinel
    surveillance system involving selected counties in the U.S. to provide
    reliable estimates for the incidence of acute hepatitis C. However, the
    current number of study sites (5) do not provide an adequate number of
    cases of hepatitis C and we need to expand their number to accurately
    determine the number and source of these infections.
        To address the issue of HCV-related chronic liver disease, CDC is
    attempting to establish sentinel surveillance. It is projected that at
    least five sites would be required to provide valid surveillance data.
    Such surveillance would provide information on the various causes of
    chronic liver disease, determine disease trends, and provide a means to
    evaluate the effectiveness of various prevention or treatment
    strategies. It is anticipated that funding for one surveillance site
    will be awarded in fiscal year 1997. Currently, death certificate data
    are our only means of monitoring this disease. As a result, an accurate
    determination of the magnitude of the problem or the etiology of
    chronic liver disease has been difficult to ascertain.
        Question. It is vital that on this and all infectious diseases we
    educate the public as far as prevention and disease recognition. Is the
    CDC developing appropriate educational tools to educate physicians and
    health providers on effective detection and treatment strategies?
        Answer. The Public Health Service is using three approaches to
    identify and educate persons at risk of HCV infection: verbal, written,
    and visual material directed to the public; educational efforts
    directed to health care and public health professionals; and
    development of community-based prevention programs. These educational
    programs are being developed through partnerships with non-governmental
    voluntary organizations, such as the American Liver Foundation, the
    Hepatitis Foundation International, the American Digestion Health
    Foundation, and with professional societies. Public service
    announcements have the potential to reach a broad population. The
    educational messages directed at the public will include information on
    who is at risk for HCV infection, the consequences of infection, the
    need for early diagnosis and possible treatment, and recommendations to
    prevent infection and transmission. Educational efforts directed at
    physicians and other health care professionals will include the
    appropriate medical management of HCV infected patients, known and
    potential risks for HCV infection and transmission, need to ascertain
    complete risk factor histories from their patients, and appropriate
    evaluation of high-risk patients for evidence of infection.
        NIH and CDC cosponsored a Consensus Development Conference on
    Management of Hepatitis C that was held March 24-26, 1997, and the
    results will be widely disseminated. CDC is developing an interactive
    satellite teleconference, scheduled for broadcast November 22, 1997, to
    educate primary care providers regarding the screening, diagnosis,
    management, and prevention of hepatitis C. Written educational
    materials are being developed for conference attendees and will be
    available for wider distribution. Informational packages are also being
    developed for health care providers, policy makers (e.g., state and
    local health departments, managed care organizations, insurance
    companies). In addition, CDC is working with patient support groups to
    evaluate currently available education materials for the general
    public, and to develop new educational materials where needed, with a
    special emphasis on materials for high risk populations (e.g.,
    injecting drug users).
        Question. What research is CDC pursuing based on last year's Senate
    report?
        Answer. An RFA will be issued this spring to provide financial
    assistance to a voluntary agency in fiscal year 1997 for development
    and dissemination of educational materials on hepatitis C.
                               hepatitis c: costs
        Question. In this era of health care cost containment, what
    prevention and treatment is the department recommending to effectively
    minimize this catastrophic expense for end stage liver disease?
        Answer. Hepatitis C is a major public health problem in the United
    States. Currently, prevention and treatment options for hepatitis C are
    limited. No vaccine is available for hepatitis C. Post-exposure
    prophylaxis with immune globulin does not appear to be effective in
    preventing HCV infection, and is not recommended by the Advisory
    Committee on Immunization Practices. In the absence of vaccine or
    postexposure prophylaxis, recommendations to prevent transmission of
    HCV to others are limited by the extent of our understanding of the
    risk of HCV transmission in different settings. Although all infected
    patients should be considered infectious and informed of the
    possibility of transmission to others, no reliable tests are available
    that can determine infectivity. Counseling recommendations to prevent
    transmission of HCV to others were published by the United States
    Public Health Service in 1991 and disseminated widely. They were
    reiterated by the recent Consensus Development Conference, and they
    will be included in newly developed educational materials directed at
    both the public and health care professionals.
        High-risk drug and sexual behaviors appear to account for most of
    the HCV infections transmitted in the United States. Unfortunately,
    persons with these behaviors are the most difficult to reach with
    prevention efforts, and there is no funding for programs aimed at the
    prevention of hepatitis C in these high-risk populations. Our greatest
    unmet need in this area is the initiation of studies to determine the
    dynamics of HCV infection among injection drug users. HCV is the most
    common infection among this risk group, even more common than hepatitis
    B virus and HIV. Data from such studies are needed to better target and
    evaluate prevention strategies.
        Interferon is the only treatment licensed by the Food and Drug
    Administration for treatment of chronic hepatitis C. However,
    interferon is effective in only 10 percent to 20 percent of persons
    treated, it can cause severe side effects, and there is no available
    evidence that treatment has any effect on quality of life, disease
    progression, or long term outcome. In addition, this therapy has been
    ineffective in eliminating HCV infection in persons with more advanced
    stages of disease or in persons with no biochemical evidence of active
    liver disease. Thus, at the recent National Institutes of Health
    Consensus Development Conference, a panel of experts recommended
    interferon treatment only for a selected group of patients with chronic
    hepatitis C who are at greatest risk of progression to cirrhosis.
                          allergies and antihistamines
        Question. I am informed that allergies and subsequently certain
    treatments for allergies, impact negatively on children's learning.
    Educating parents and teachers as to the signs and symptoms of
    allergies could alleviate the problems incurred by children in whom
    allergies are undetected. What do you think HHS should do through the
    CDC to ensure that the inappropriate treatment of allergies is not
    contributing to the incidence and severity of asthma?
        Answer. Asthma is the leading chronic disease among children. More
    than 10 million days of school are missed each year in the United
    States by children with asthma. CDC estimates that asthma accounted for
    400,000 missed school days in Pennsylvania alone. Asthma related
    illnesses contribute to a child's inability to fully participate in
    educational, extracurricular and social activities. The effects of
    asthma are compounded by the fact that many symptomatic children are
    forced to attended school, because their parents are unable to take off
    from work. An additional complication of asthma is that the attacks
    occur without warning. This poses a problem in that most schools, as a
    matter of policy, do not allow children to carry their medications on
    them. To receive the medicine, the child needs to go to the school
    clinic.
        Over the past several years, CDC and other HHS agencies have funded
    several pilot projects directed at improving medical management of
    asthma and reducing the number of exacerbations that often result in
    hospitalizations or emergency room visits. One key element of an
    effective asthma prevention program is to educate parents and health
    care providers about the appropriateness of medical management with
    regards to asthma and how to avoid an exacerbation triggered by
    allergens. CDC's goal is to expand its asthma prevention program over
    the next several years.
        A preliminary review of the medical literature conducted at CDC in
    response to this inquiry did not identify any peer-reviewed
    publications that linked the treatment of allergies with children's
    learning in school.
        Question. I am informed that Dr. Gary Kay, of the Georgetown
    University School of Medicine Department of Neurology, has studied and
    documented the adverse effects of sedating antihistamines on children's
    learning and worker's performance. Has the Department of HHS, or NIOSH,
    looked at the safety issues involved in workers taking sedating
    antihistamines?
        Answer. NIOSH has not conducted research on safety issues regarding
    workers taking sedating antihistamines.
                           h. pylori public education
        A 1994 NIH Consensus Development Conference concluded that the
    bacterium helicobacter pylori causes most ulcers, not stress or diet as
    previously believed, and that most ulcers can be cost-effectively cured
    by eradicating H. pylori.
        In response, the Senate included in its Committee Report
    accompanying the Fiscal 1997 Labor, HHS, Education Appropriations bill,
    funding for the Centers for Disease Control and Prevention to conduct a
    public education campaign on H. pylori eradication on and its link to
    ulcer disease. Furthermore, the Committee Report requested that CDC
    submit to Congress a report within 120 days on its plan to conduct such
    an effort and the appropriate design of the campaign. The full Congress
    endorsed funding for the H. pylori public education campaign by
    including language similar to the Senate's in the Conference Report
    accompanying H.R. 1360.
        I understand that the CDC has made significant progress toward
    complying with the Congressionally-mandated H. pylori public education
    campaign. Consistent with Congress' recommendations, CDC organized a
    day long conference in January on H. pylori and the public education
    campaign where representatives from other Federal agencies, consumer
    organizations and the private sector met to discuss issues involved in
    the conduct of this campaign. I commend CDC for all its efforts to date
    in implementation of the Congressional recommendations.
        I look forward to receipt of this report on CDC's plans for
    implementation of the H. pylori public education campaign.
        Question. What is the timing for submission of CDC's report to
    Congress?
        Answer. The draft plan has been developed in collaboration with
    public and private sector representatives and is presently in clearance
    for submission to Congress.
        Question. What is CDC's calendar for full implementation of the
    Congressionally mandated H. pylori public education campaign?
        Answer. CDC has begun examining existing private sector H. pylori
    communications campaigns. When this is complete, CDC will design it's
    H. pylori educational campaign, with collaboration and input from
    private and public sector partners. It is anticipated that funds for
    the investigation of audience information preferences, message design,
    production/distribution of materials and evaluation will be obligated
    fiscal year 1997. The campaign is anticipated to begin in early fiscal
    year 1998 with evaluation commencing by the end of fiscal year 1998.
                                samhsa and hrsa
        Question. Regarding the National Women's Resource Center, identify
    the amount of funds SAMHSA and HRSA that has been supplied to NWRC
    under contract for fiscal year 1997 and projected for fiscal year 1998.
        Answer. SAMHSA initiated the National Women's Resource Center
    (NWRC) in fiscal year 1994 under a 3 year contract, originally
    scheduled to end in July 1997. However, SAMHSA will provide an
    additional $272,000 in fiscal year 1997 to support activities and
    services under this contract. Also, SAMHSA is currently discussing
    inter-agency agreements with other Federal agencies designed to
    continue aspects of this program into fiscal year 1998. HRSA is
    expected to provide $40,000 for fiscal year 1997 but no decisions have
    been made on funding for fiscal year 1998.
        Question. Describe the chief activities and services supported by
    Federal funds and major increases or decreases in the level of such
    services, if any, anticipated for fiscal year 1998.
        Answer. The National Women's Resource Center serves an important
    role as a focal point for information, referral, policy, research,
    dissemination, training, service design, technical assistance and
    evaluation findings of programs targeting substance using pregnant and
    postpartum women and their infants. The Center stimulates effective
    policies and practices for prevention and addresses maternal use of
    addictive substances and the negative consequences of maternal
    substance use on their infants and children.
        The Center is currently developing a state-of-the-art report to the
    field on prevention, intervention, and treatment approaches deemed
    successful in combating mental illness and substance abuse in women
    across their life cycle. Additionally, the Center supports the
    following activities: develops and disseminates resource packages to
    the substance abuse and mental health prevention and treatment field;
    conducts a community team development institute designed to foster
    national leadership in the substance abuse and mental health areas
    critical to women; and maintains a 1-800 help line for appropriate
    information and referral. In fiscal year 1998, as the contract phases
    down, the Center will continue to support the community team
    development institute and provide limited technical assistance.
                               cdc: blood safety
        In last year's report language, the Senate Appropriations Committee
    expressed deep concern over the safety of our nation's blood supply and
    included in CDC's fiscal year 1997 appropriations increased funding to
    ensure that steps were being taken to address emerging infectious
    disease problems and to respond to critically important blood safety
    issues affecting all Americans, with particular concern for people with
    hemophilia. On blood safety, CDC was called upon to implement a
    strengthened blood safety surveillance system, including a serum bank
    for blood product recipients and patient-related outreach activities.
        Question. How has CDC allocated funds in the National Center for
    Infectious Diseases to carry out the objectives set forth by Congress
    for fiscal year 1997?
        Answer. In fiscal year 1997, $400,000 of Emerging Infections
    resources has been provided to address blood safety issues. In
    addition, CDC is providing $2.2 million in extramural funding to State
    and local health departments to monitor the complications of
    hemophilia, including safe blood and blood products. CDC is committed
    to ensure the safety of the nation's blood supply and is enhancing its
    surveillance systems to better monitor and detect adverse events among
    blood product recipients.
        Question. What progress has been made in creating an active
    surveillance system to monitor, detect and warn of adverse effects
    among blood product recipients?
        Answer. A national surveillance system is currently being
    established to monitor infectious disease complications among the
    approximately 13,000 persons with hemophilia A or B who receive care at
    federally funded hemophilia treatment centers (HTCs). This system will
    provide prevalence and incidence rates of seroconversion for viral
    illnesses including HIV and hepatitis (A, B, C). Cases of
    seroconversion will be investigated for possible association with
    clotting factor, which has implications for blood safety. Establishment
    of a serum bank is an integral part of this surveillance system.
    Implementation of the project will begin in the first quarter of 1997
    with a gradual phasing in of the system on a national basis as
    resources permit. Investigational Review Board (IRB) approval has been
    obtained at CDC and IRB approval is currently being obtained at the
    local level for these activities.
        Question. What is the status of the serum bank for blood product
    recipients? How much funding has CDC allocated to carry out this
    project?
        Answer. Establishment of a serum bank is an integral part of this
    surveillance system among persons with hemophilia. CDC is working with
    HTCs to provide patients with free testing for bloodborne infections
    and to monitor and investigate possible infections. As part of these
    efforts, CDC also provides assistance for storage of samples for
    potential investigations of infectious agents. Through cooperative
    agreements, CDC has awarded approximately $6 million to HTCs;
    approximately half of this money is being used for implementation of a
    national surveillance system, which includes the establishment of a
    serum bank for blood product recipients.
        Question. Describe how CDC is coordinating with the hemophilia
    treatment centers to establish the serum bank?
        Answer. CDC is working closely with HTCs to identify and prioritize
    prevention efforts for the complications of hemophilia, develop and
    evaluate interventions, and obtain input into the development of
    educational programs for health care providers and the public. CDC is
    also working with HTCs to determine the best means of obtaining the
    information needed to establish and implement the serum bank while
    providing the least amount of disruption to current HTC operations.
        Question. The Committee also requested that the CDC work with the
    National Hemophilia Foundation in moving forward with this expanded
    blood safety effort. What discussions have been held to plan outreach
    activities with its patient groups and treatment centers as part of
    this strengthened surveillance system?
        Answer. Persons who currently use blood products or who are at risk
    for future use should understand the purpose of CDC's blood safety
    efforts as well as the importance of their participation in
    surveillance activities. The National Hemophilia Foundation (NHF) and
    CDC have been working closely with consumers, health care providers,
    and local hemophilia organizations to plan a national conference to
    examine key prevention education messages and identify innovative
    strategies for their implementation on the local and national levels.
    This conference, The National Conference on Prevention Education;
    Health Strategies for the New Millennium, will take place in June 1997
    in Louisville, Kentucky. The NHF and CDC recognize the importance of
    collaboration among health care providers, consumers, and peer
    organizations in developing a strong prevention program. Each of the 40
    NHF chapters or hemophilia organizations will select four key
    representatives to attend the conference. These representatives will
    include a chapter board member or staff professional, two peer
    coordinators, and an HTC provider. These individuals will compose a
    core ``team'' whose members will return to their communities with
    information and resources to help expand prevention education programs
    and practices. The conference will include a) plenary sessions with
    leading experts; b) breakout sessions on defining needs of audiences
    and strategies to influence behavior change; c) a learning center with
    reference materials and innovative educational techniques; d)
    networking opportunities; and e) a customized workbook and education
    guide for program planning.
        CDC staff are also participating in each of the 12 regional
    meetings of HTC providers throughout the country to introduce the
    universal data collection system and provide information about CDC's
    surveillance activities. These meetings provide an opportunity for
    health care providers to offer input to CDC in the development of its
    programs. Consumers and health care providers are also obtaining
    information about CDC's prevention efforts through publications
    distributed by NHF, local chapters, and the Hemophilia Research
    Society.
        Question. How is CDC coordinating its blood safety efforts with
    other Public Health Service agencies, including the Food and Drug
    Administration and the National Institutes of Health?
        Answer. CDC is coordinating its efforts with other Public Health
    Service agencies through participation in the monthly interagency
    conference calls of the PHS Interagency Working Group on Blood Safety
    and Availability and participating in the FDA Blood Products Advisory
    Committee, the Blood Safety Committee, and, the soon to be convened,
    Advisory Committee on Blood Safety and Availability. Also, CDC has
    worked collaboratively with the FDA in the epidemiologic and laboratory
    aspects of several recent investigations related to the safety of blood
    products (e.g. bacterial contamination of intravenous albumin,
    hepatitis A contamination of clotting factor concentrates). CDC has co-
    sponsored, planned and participated in recent PHS public meetings
    related to blood safety (e.g., Notification of Plasma Product
    Withdrawals and Recalls and Workshop on Incentives for Volunteer
    Donors).
                        provider sponsored organizations
        In Southeastern Pennsylvania, Medicare managed care penetration 18
    months ago was less than 10 percent. Today, it's over 30 percent and
    should increase to more than 50 percent by the year 2000. But the
    marketplace is limited to major managed care plans. Seniors have little
    choice. Providers say they can provide a community-based alternative to
    the commercial health plans that will provide equivalent service while
    keeping health care dollars in the community. The alternative plans
    would be called Provider Sponsored Organizations. The providers say
    they cannot contract with HCFA to be direct Medicare health plans.
        Question. Do you support Provider Sponsored Organizations as
    another option for Medicare enrollees?
        Answer. Yes, the Administration has long supported giving Medicare
    beneficiaries the option to enroll in Provider Sponsored Organizations,
    provided there are appropriate standards in place to protect
    beneficiaries. The President's 1998 Budget proposal contains a new PSO
    contracting option which will require that contracting PSOs meet
    existing HMO standards in the areas of quality, access, marketing,
    beneficiary liability, benefits, and appeals and grievances. Because
    PSOs have different delivery systems that HMOs, new standards for
    fiscal soundness and private enrollment would be applied to these
    entities.
        Question. Since HCFA supports PSOs, and has in fact started a
    demonstration project, why have you only granted approval for six plans
    throughout the nation?
        Answer. At this time, the Social Security Act does not permit HCFA
    to contract with any commercial managed care plan unless the plan is
    licensed by a state as an HMO. Therefore, the only way for HCFA to
    contract directly with PSOs is through the Medicare demonstration
    authority. HCFA has accepted 11 PSOs for participation in the Medicare
    Choices demonstration, a project which will give us some experience in
    overseeing these new managed care organizations while allowing us to
    test unique standards related to certification, quality monitoring and
    risk assumption. Four of the eleven PSOs approved for participation in
    the Medicare Choices demonstration have been awarded a contract and
    have begun enrolling beneficiaries, with the remaining 7 plans are
    scheduled for further review before they may begin marketing and
    enrollment.
        Question. Can't we speed up the process? Can this best be
    accomplished through the regulatory process, or will it require
    legislation?
        Answer. As stated in the previous response, HCFA does not currently
    have the legal authority to begin contracting with PSOs on a national
    basis. It is imperative that legislative standards and regulatory
    authority be in place before we allow PSOs--which may not be licensed
    as insurance products by the state, to provide services to the
    vulnerable Medicare populations.
        Question. Are there statutory barriers to PSO development?
        Answer. The primary barrier to PSO development at the federal level
    is the statutory requirement that all Medicare managed care plans be
    state-licensed HMOs. In cases where a PSO has obtained the required
    state licensure, federal law requires minimum commercial enrollment
    standards that may be difficult to meet. The Administration's PSO
    proposal will address these statutory barriers by amending the Social
    Security Act to allow direct contracts with PSOs, and by establishing
    federal pre-emption of State licensing requirements under certain
    circumstances.
        Question. Do you support a federal process for certification of
    PSOs immediately upon enactment of PSO authorization for the purpose of
    providing care to Medicare Patients?
        Answer. The President's budget proposal will expand the options for
    Medicare beneficiaries by allowing them to enroll in the same types of
    managed care organizations that are available in the commercial market,
    including PSOs. Since we will allow private enrollment determinations
    to be based on the number individuals for whom the PSO network
    providers assume ``substantial'' financial risk, PSOs will not have to
    wait for a certain level of commercial participation before applying
    for a Medicare contract. In addition, limited federal pre-emption of
    state licensure requirements will also encourage the immediate
    participation of PSOs. Provided that the legislative authority includes
    sufficient beneficiary protections, HCFA should be able to approve
    qualified Provider Sponsored Organizations relatively quickly, using
    the knowledge gained from the Medicare Choices demonstration and our
    extensive experience monitoring the operations of more than 300
    Medicare HMOs.
        Question. One obstacle for PSO development is HCFA's ``50/50'' rule
    which requires managed care plans that contract with HCFA to limit
    Medicare recipients to no more than 50 percent of their overall
    enrollees. Since commercial markets are already dominated by existing
    managed care plans, this rule can in effect keep PSOs out of certain
    key markets. Do you believe that the 50/50 rule needs to be changed in
    order to accommodate PSOs that are doing federal-only business?
        Answer. The ``50/50'' rule and a minimum level of commercial
    enrollment are two contracting standards that were established to
    ensure a certain level of quality. The existence of a commercial
    enrollment base gives the contracting plan a basis for an accurate
    adjusted community rate proposal, and assures that Medicare and
    Medicaid beneficiaries receive high quality care that results from
    market competition for commercial accounts. In addition, the
    requirement that Medicare managed care contractors operate successfully
    in the commercial market demonstrates to us that the plan has
    experience with risk assumption and a moderately mature provider
    network.
        As managed care has grown, and as the population ages, the 50/50
    requirement has become less effective as a measure of managed care
    quality, and is in fact a hindrance to competition in some parts of the
    country. Therefore, the Administration's budget proposal will give the
    Secretary the authority to establish regulatory quality standards to
    replace the obsolete private enrollment requirements. HCFA is currently
    working on several broad quality initiatives such as requiring managed
    care plans to report HEDIS performance measures, conducting a
    beneficiary satisfaction survey, and testing the use of encounter data
    by beneficiaries in the Choices demo. The data that we glean from these
    projects will help us to develop a state-of-the-art quality measurement
    system to replace the 50/50 rule. We will continue to work closely with
    beneficiary advocacy groups, consumer organizations and other health
    care purchasers to define outcomes measures and other quality indices
    which will may eventually replace the 50/50 requirement.
                               contract rollovers
        As I mentioned, the growth of Medicare managed care, particularly
    in my home state, has been spectacular. Insurers in my state say they
    have been signing up seniors at the rate of 10,000 a month. Current
    contracts between providers and managed care plans were signed before
    Medicare managed care gained significant market share, and those
    contracts are based on an enrollee base that is younger than 65,
    healthier, and less likely to be hospitalized. However, as Medicare
    managed care grew, the managed care plans rolled this new population
    onto existing contracts. Because this growth was not planned when
    contracts with providers were signed several years ago, providers have
    been hit with unplanned reimbursement consequences. Providers believe
    that Medicare managed care products should be subject to new contract
    negotiations with providers, rather than rolled onto existing
    contracts. Since Medicare managed care products are relatively new,
    serve a different population demographic, and are composed of enrollees
    that are higher-utilizers in general, this makes sense.
        Question. Why has HCFA permitted the managed care plans to roll
    their new products into existing HMO contracts?
        Answer. HCFA requires separate provider contract arrangements for
    the provision of services to Medicare beneficiaries served under
    contracts with managed care organizations. HCFA does not allow
    contracting managed care organizations to ``roll'' the requirements for
    coverage of Medicare beneficiaries into existing provider contracts
    established for commercial networks.
        All Medicare contracting managed care plans must obtain separate
    agreements with network providers that apply only to the Medicare
    contract--either in the form of a new provider contract, or by amending
    the existing (commercial) provider contract. This separate contract or
    amendment gives every provider the opportunity to negotiate terms and
    reimbursement for the services they will provide to Medicare
    beneficiaries.
        Question. (Follow-up question). In greater Philadelphia, Medicare
    is about 30 percent of the overall market. Given the marketplace
    dynamics, with most markets dominated by a few large managed care
    plans, providers cannot afford to be excluded from an HMO network. They
    have little choice but to be part of these emerging networks. But,
    shouldn't HCFA level the playing field as part of its role as providing
    oversight over the Medicare program?
        Answer. The health care marketplace is rapidly changing for both
    Medicare and commercial insurers, and these systematic changes are
    having a dramatic effect on health care providers. As you point out
    Senator, Medicare makes up a significant proportion of the health care
    market in much of the country, and managed care program participation
    is increasing commensurately. Just as with the federal government's
    switch to prospective payment systems in the 80s, the current shifts to
    managed care are changing the competitive landscape for all health care
    providers.
        Managed care companies can compete in the market by lowering prices
    and increasing benefits as a result of the savings they get through
    negotiating rates with a limited number of providers. In this
    competitive market, providers agree to obtain lower payment for
    services in exchange for a guaranteed patient volume. Individuals who
    join managed care plans are lured by lower premiums and increased
    benefits that the plan pays for with the money saved in provider
    payments. Given these considerations, it is obvious that there is a
    financial benefit to providers only when they are able to receive a
    certain level of capitation based on a defined number of patients. It
    is in the provider's best interest to keep the ratio of enrollees to
    providers relatively high, in order to collect more premiums from the
    plan. Therefore, particularly in markets with high managed care
    saturation like Philadelphia, some providers will not be invited to
    contract with certain managed care plans. But, it is just as likely
    that certain providers will never be willing to give up an independent
    practice in order to join an HMO network. In the existing health care
    environment, is seems logical that providers in both cases--those that
    are unwilling to participate in a managed care network, as well as
    those that are not invited to join, will face reduced fee-for-service
    patient volume along with decreased revenue.
        One thing that HCFA cannot do is to ''level the playing field'' by
    establishing market controls that could have the effect of reducing
    beneficiary choice. For example, if all beneficiaries in a certain
    market were to choose to enroll in a Medicare managed care plan, HCFA
    could not deny that option to some, in order to ensure a clientele for
    fee-for-service providers. On the other hand, the Administration
    proposes to make a more level playing field for all providers in an
    environment of increasing managed care by expanding the types of
    organizations that are eligible to receive a direct contract with HCFA
    to provide services to Medicare beneficiaries. The President's budget
    proposal includes provisions which will allow provider owned managed
    care organizations such as preferred provider organizations, or PPOs,
    and Provider Sponsored Organizations, PSOs, to contract with HCFA on a
    capitated basis to provide eligible beneficiaries with all Medicare
    benefits and services.
                        average adjusted per capita cost
        Medicare managed care organizations are reimbursed according to the
    Average Adjusted Per Capita Cost (AAPCC), which is approximately 95
    percent of the PPS rate for Medicare. However, included in the AAPCC
    calculation is reimbursement for medical education and for treating the
    poor (disproportionate share). Managed care organizations do not
    provide these services, yet they do not generally pass on these fees to
    providers. In Pennsylvania, the Medicaid program this January began to
    reimburse providers directly for medical education and disproportionate
    share.
        Question. Is it your view that graduate medical education and
    Medicare disproportionate share should be carved out of the current
    AAPCC payment?
        Answer. Yes.
        Under the President's proposal, payments for IME, GME, and DSH
    would be carved out of the local payment rates over a two-year period
    (50 percent in 1998; 100 percent thereafter) and provided directly to
    teaching and disproportionate share hospitals for managed care
    enrollees and to entities with recognized teaching programs.
        The local rates are used to determine blended payment rates. Under
    the President's proposal, plans are paid the greater of--(1) a blend of
    the local and national rate, (2) a minimum payment amount ($350 in
    1998) or (3) a minimum percent increase over the previous year's rate
    (0 percent in 1998 and 1999 and 2 percent thereafter).
        This policy would guarantee that payments designed to compensate
    hospitals for conducting teaching programs and for caring for the
    neediest citizens are made directly to such hospitals for managed care
    enrollees. The carve out does not represent a reduction in payment for
    managed care enrollees.
      --Managed care plans can consider these funds available to such
            hospitals when they negotiate their rates.
      --A current law provision that requires non-contracting hospitals to
            accept the Medicare DRG amount as payment in-full would be
            modified to require non-contracting hospitals to accept the DRG
            amount, minus the IME/GME/DSH carve-out, as payment in-full.
        Question. What payment mechanism should be used to pass these
    dollars on to providers?
        Answer. We believe that we already have systems that would be
    appropriate for making these additional payments to hospitals.
    Basically, when a hospital treats a Medicare managed care enrollee, it
    will file a bill with Medicare that contains most of the information as
    a regular fee-for-service (FFS) bill. These bills for managed care
    enrollees are commonly referred to as ``shadow bills'' since they are
    more for informational purposes. Using this bill, Medicare will be able
    to calculate how much GME/IME/DSH the hospital would have been entitled
    to under FFS, and will send that amount to the hospital through the
    regular billing process. We believe this is the simplest and most
    efficient way to make the extra payments.
                                     ______

                     Questions Submitted by Senator Cochran
                   public policy change: rural to other urban
        Question. In October 1996, the Health Care Financing Administration
    implemented a policy that eliminated the opportunity for rural
    hospitals to be reclassified from ``rural'' to ``other urban.'' These
    28 hospitals serve a disproportionate share of indigent clients and
    provide needed services to rural communities. What is the public policy
    reason behind this public policy change?
        Answer. When the original prospective payment system was put in
    place, the base payment rates for rural hospitals were lower than those
    for urban hospitals. The geographic reclassification process, which
    permitted rural hospitals to be designated ``other urban'' for base
    payment rate purposes, was designed to correct inequities arising in
    instances where a rural hospital shared a labor market with urban
    institutions, or where rural hospitals for other reasons experienced
    the same cost pressures as urban institutions. A legislative change
    effective October 1994 eliminated the base payment differential between
    rural and urban hospitals, except for ``large urban'' hospitals serving
    urban areas with a population greater than one million. Because of the
    legislative change, there is no longer any need to reclassify rural
    hospitals to ``other urban'' for the purposes of equalizing base
    payment rates, and the policy change put into effect in fiscal year
    1996 reflects that fact.
                             fda proposes user fees
        Question. The President's fiscal year 1998 budget request for the
    Food and Drug Administration proposes new user fees on industry. Many
    of us are concerned that the administration has begun funding the FDA
    through user fees in areas that traditionally have been mandated by the
    government and have been funded through the appropriation process.
    Could you explain the administration position?
        Answer. The Administration's fiscal year 1998 budget request does
    include new user fees to partially cover the cost of FDA activities
    that Congress has traditionally funded through appropriations. However,
    FDA is not being singled out for these new fees. The President's fiscal
    year 1998 budget proposes new and expanded fees across many Federal
    programs, which serve as an integral part of the President's overall
    plan to balance the budget by fiscal year 2002.
        FDA provides a public service by protecting consumers from unsafe
    and impure foods and ensuring that drugs, medical devices, and
    biological products are safe and effective. Industries with products
    under the regulatory jurisdiction of FDA benefit from increased
    consumer confidence in their products, and from a strong and efficient
    agency capable of conducting product reviews in a timely manner.
        We are prepared to work with the Congress and our many
    constituencies, including FDA regulated industries, to develop these
    proposals for actual implementation. We plan to make every attempt to
    structure the new fees in such a way as to minimize any additional
    burdens on industry.
                         nhlbi: cardiovascular disease
        Question. Mississippi has a very high rate of chronic illness such
    as cardiovascular disease, diabetes and stroke. What is being done at
    the National Heart, Lung, and Blood Institute (NHLBI) to combat
    cardiovascular disease and what in particular is being done to study
    the disproportionally higher rates of cardiovascular disease among
    African Americans?
        Answer. As examples of NHLBI's efforts to combat cardiovascular
    disease, the Institute has several clinical trials addressing the
    treatment and prevention of hypertension, with a particular focus on
    the African American population. The Antihypertensive and Lipid
    Lowering Treatment to Prevent Heart Attack (ALLTPHA) is comparing four
    commonly used antihypertensive medications for their effectiveness in
    reducing the rate of heart attacks in older patients with additional
    risk factors. ALLTPHA has enrolled more than 10,000 African Americans
    among more than 26,000 patients entered to date. A second program
    supports a series of five coordinated grants through which
    investigators in five major cities are conducting trials aimed at
    improving hypertension control among inner-city populations. A third
    program, Dietary Programs to Stop Hypertension (DPSH), is conducting a
    series of carefully controlled dietary studies in persons with high
    normal or slightly elevated blood pressure, 50-60 percent of whom are
    African Americans, and is likely to report some important positive
    findings. A fourth trial, called PATHWAYS, is targeting another
    minority group, American Indians, in an attempt to prevent obesity in
    childhood.
        Trials focusing on heart disease in women are evaluating the
    effects of aspirin, antioxidant vitamins, and hormone replacement
    therapy on first or recurrent heart attacks or progression of coronary
    heart disease. The Activity Counseling Trial seeks to learn the best of
    several approaches to increasing physical activity through counseling
    delivered in doctors' offices and clinics, for both men and women. The
    Rapid Early Action for Coronary Treatment Trial, is targeting whole
    communities, including several with large minority populations, to
    reduce the time for seeking acute medical care. Other ongoing trials
    are addressing the use of antiarrhythmic drugs compared to an
    implantable defibrillator to prevent sudden cardiac death in high risk
    cardiac patients; beta-blocking medication to prolong survival in
    congestive heart failure; alternative strategies for the management of
    atrial fibrillation, and the use of an angiotensin-converting enzyme
    inhibitor to prevent recurrent heart attack and death following first
    heart attacks. All of these trials have minority representation.
        NHLBI has also been working with the NIH Office of Research on
    Minority Health and three institutions in the Jackson, Mississippi area
    (University of Mississippi Medical Center, Jackson State University,
    and Tougaloo College) to identify scientific priorities and
    implementation steps for an expansion of the ongoing Jackson component
    of the Atherosclerosis Risk in Communities (ARIC) study. The Institute
    envisions such a study, if successful in its planning and pilot phases,
    to become a community study in a predominantly African-American cohort
    similar to the Framingham Heart Study. Areas of scientific priority
    include: (1) studies of high rates of complications from hypertension
    in African-Americans, including stroke, renovascular disease, and
    congestive heart failure; (2) expanded studies of genetic factors
    related to cardiovascular disease in African-Americans; and (3)
    examination of cardiovascular disease and its risk factors in younger
    middle age (35-44) and older (70 and above) adults, to complement study
    subjects in the ongoing Jackson ARIC cohort,
        Further, NHLBI has several health education activities as part of
    its national education efforts to help reduce cardiovascular risk
    factors in minority populations. For example, the NHLBI has funded 11
    state health departments in the southeastern U.S. with high stroke
    death rates. A large number of African Americans reside in these
    states. The objectives of the projects were to implement health
    education activities to prevent and control risk factors of
    cardiovascular disease. These States are conducting one or more of the
    following programs: high blood pressure control, smoking cessation,
    weight reduction, healthy eating, and physical exercise.
        Another activity is the National Physicians' Network, a group of
    physicians and other health professionals who provide care to African
    Americans. This group has agreed to work with the NHLBI to conduct
    professional education training programs as well as community education
    programs in African American communities. Members of the Association of
    Black Cardiologists and the National Medical Association are the key
    participants in these activities.
        The NHLBI has developed professional education and public education
    materials to help facilitate the professional education training and
    community outreach activities to reduce cardiovascular disease risk
    factors and to encourage the adoption of healthy-heart behaviors. The
    NHLBI has also developed an extensive public education campaign
    targeting African Americans. A series of 39 one-minute radio programs
    was developed on issues of particular interest to African American
    audiences as part of NHLBI's ``HealthBeat Radio Network.''
    ``HealthBeat'' is distributed to more than 900 radio stations across
    the U.S.
                       ncrr and idea assisting nih grants
        Question. This subcommittee has included report language over the
    last several years endorsing the activities of the National Center for
    Research Resources (NCRR) and the IDeA program. This program is
    designed to assist states that traditionally have been unable to
    effectively compete for regular NIH grants. Please update the
    Subcommittee on the status of the IDeA program and any progress in
    improving the ability of participating states in obtaining NIH grants.
        Answer. The fiscal year 1996 appropriation for the Institutional
    Development Awards (IDeA) program was $2.1 million. A Program
    Announcement was issued in December 1995 for applications, which could
    request up to three years of support for no more than $200,000 per year
    in direct costs with a requirement of matching funds by the
    institution. Applications were received from 12 of the 15 eligible
    States; they were peer reviewed for scientific merit and nine of these
    applications were funded. The appropriated funds for fiscal year 1997
    ($2.6 million) will be used to meet the commitments of these existing
    awards, and, based on peer review, to award some additional grants in
    the area of science education to institutions in States eligible for
    IDeA grants.
        An evaluation of the impact of the IDeA program is being performed.
    Reports at meetings and discussions with grantees suggest that the
    program has been important in providing seed support for junior
    investigators until they can obtain independent funding, and in linking
    senior investigators with new faculty members, particularly in areas of
    clinical or basic science which are narrowly focused.
                                     ______

                      Questions Submitted by Senator Bond
                education and training for child care providers
        As we have known in Missouri for years, the early years of a
    child's life are a critically important time for learning. The quality
    of the care and education that a child receives before age five can
    influence all learning later in life. Children who are not cared for in
    an environment conducive to their growth and development often arrive
    at kindergarten unprepared to learn. We must provide a safe, healthy
    environment so that young children can grow and develop and enter
    school ready to learn.
        Question. What is the Department doing to improve the training and
    quality of personnel providing child care services?
        Answer. As you know, the Child Care and Development Fund (CCDF)
    provides states wide flexibility in setting standards for child care.
    States decide what kind of licensing requirements they will hold
    providers accountable to, and which providers will be exempt from
    licensing. The CCDF does, however, assure that all providers caring for
    children funded by the program, even license exempt care, must meet
    basic health and safety requirements as set by the state.
        The CCDF also offers training and other supports to providers. The
    Act requires that states dedicate a minimum of 4 percent of their CCDF
    resources to building the quality and availability of child care.
    States can use those funds to recruit, train and support providers.
    Resource and Referral agencies and provider organizations play an
    important role in this regard by helping to link individual providers
    to critical resources.
        The Department supports the efforts of child care grantees to
    improve the implementation and administration of their child care
    systems through a national technical assistance effort. Our technical
    assistance activities promote promising practices and provide
    information on a variety of quality activities and services.
        In 1995, in addition to our national State and Tribal child care
    conferences and regional meetings, we held a National Child Care Health
    Forum through which we launched the Healthy Child Care America
    Campaign, a nationwide effort by health care and child care providers
    to improve the health and safety of children and families. Using the
    Blueprint for Action developed at the Forum, states and communities all
    over the country are making linkages between health programs and child
    care. We also held a national leadership forum ``Including Children
    with Disabilities in Child Care Settings: Connections for Quality
    Care'' in which national leaders addressed the development of an
    inclusive child care system for children with disabilities and shared
    strategies and models that can be adapted by providers in states,
    territories, and tribes.
        In 1996, we held a similar leadership forum promoting family-
    centered child care to develop guidelines for state, territorial, and
    tribal administrators, parents, and child care providers to effectively
    communicate with, support, and involve families in full-day child care
    programs. This year we are planning a leadership forum focusing on
    child care as a job, which we hope will provide tools to support
    existing child care providers as well as those newly entering the
    profession.
        In addition, ACF promotes quality comprehensive services and public
    awareness through a National Child Care Information Center that
    compiles an disseminates information on a variety of quality and
    training activities and services. We also publish a bi-monthly Child
    Care Bulletin that is distributed to over 2000 individuals and
    organizations and is available electronically on the World Wide Web and
    at a gopher site. The Bulletin highlights timely ideas and information
    to improve child care systems, program operations, and child care
    quality, and to expand child care services.
                               teenage pregnancy
        Teenage pregnancy has emerged as one of the most severe problems
    facing children and parents today. Among unmarried girls age 15-19, the
    birth rate has risen from 15 to 45 births per 1,000 teenagers, and more
    than 40 percent of young women in the United States become pregnant
    before they reach the age of 20, producing the highest teenage
    pregnancy rate of any industrialized nation. These statistics are
    extremely alarming, given the multiple and complex problems of
    adolescent pregnancy and parenthood.
        I believe abstinence is the most sound teenage pregnancy approach.
    Also, the education and promotion of strong family values are critical
    in combating the teenage out-of-wedlock birth crisis. The Personal
    Responsibility and Work Opportunity reconciliation Act of 1996
    establishes a new program on abstinence education.
        Question. Has the Department established the guidelines for this
    program and how will this program affect existing programs?
        Answer. On February 27, 1997, the Maternal and Child Health Bureau
    of the Health Resources and Services Administration published draft
    guidelines for the Abstinence Education provision of The Personal
    Responsibility and Work Opportunity Reconciliation Act of 1996. The
    comment period ended March 19 and final guidelines should be published
    by early April. Funds for the Abstinence Education Program must be used
    exclusively for the teaching of abstinence and may not be used for any
    other purpose. The Abstinence Education Program's guidance has been
    developed in consultation with other existing programs.
        Question. What resources will you provide for teenagers?
        Answer. The Abstinence Education Program was provided a mandatory
    appropriation of $50 million for each fiscal year 1998 through 2002.
    The $50 million appropriation will be awarded annually by a formula
    determined by the proportion that the number of low-income children in
    the state bears to the total of such numbers of children for the
    states. The states will be required to match every 4 dollars they
    receive of Federal abstinence education funds with 3 state dollars. The
    law says that the purpose of the funds are to enable the state to
    provide abstinence education, and at the option of the state, where
    appropriate, mentoring, counseling, and adult supervision to promote
    abstinence from sexual activity, with a focus on those groups which are
    most likely to bear children out-of-wedlock. This law does not specify
    a specific targeted age group, but discussions with states suggest that
    most of the resources will be spent on preteens and young teens in the
    9-14 year old range.
                                     ______

                    Questions Submitted by Senator Faircloth
                                synar amendment
        Question. In 1992, the Congress passed the Synar Amendment, which
    requires states that receive federal funds for substance abuse
    prevention and treatment to enact and enforce laws prohibiting the sale
    of tobacco to minors. HHS issues a proposed rule implementing the Synar
    Amendment in August 1993 but did not issue final regulations until
    January 19, 1996. Why did the Administration delay so long in issuing
    the Synar regulation?
        Answer. Over a two year period, we carefully analyzed the public
    comment (over 3,000 received) and sought to develop a reasonable
    regulatory scheme. The comments received on the regulation prompted us
    to rethink our approach, in particular the issue of imposing
    requirements on States that would have been costly to carry out.
    Because of concerns about unfunded mandates, we made changes to avoid
    an overly burdensome regulation while fulfilling the propose of the
    legislation. In addition, we tried to be as thorough as possible in our
    planning, review, and implementation process to ensure a strong,
    quality regulation.
        Question. The delay in issuing final regulations means that state
    enforcement efforts have only recently begun. Given this
    Administration's emphasis on preventing underage tobacco use, how can
    the delay in implementing the Synar Amendment be justified? (CSAP)
        Answer. SAMHSA and the Department fully supports the implementation
    and enforcement of the Synar Amendment. Given the number and complexity
    of the issues raised during the public comment period on the Notice for
    Proposed Rulemaking, SAMHSA drafted an implementing regulation that is
    both responsive to the concerns of the States, retailers, anti-tobacco
    advocacy organizations, etc., as well consistent with the intent of the
    legislation. The delay in implementing the Amendment was necessary, in
    order to ensure that the final rule would result in effective
    enforcement of State youth tobacco laws and ultimately a reduction in
    youth access to tobacco.
        Question. The delay in issuing final regulations means a delay in
    measuring the effectiveness of the Synar Amendment on youth smoking
    rates. Why was not the FDA rule deferred until the initial
    effectiveness of the congressionally-mandated solution could be
    determined?
        Answer. The Department did not delay the implementation of the FDA
    rules (in order to measure the effectiveness of the Synar Amendment)
    because it considers both the FDA rules and the Synar Amendment
    critical components of a comprehensive approach to reduce tobacco use
    nationally. This approach consists of a three pronged strategy--
    limiting the accessibility, availability and appeal of tobacco products
    to minors. The implementation of the Synar Amendment addresses only one
    needed piece of this larger strategy--access.
        The Department supports the careful coordination and implementation
    of all three elements of this strategy in order to achieve the targeted
    reductions in youth tobacco use set by this Administration (reduce
    youth use of tobacco by 50 percent in the next seven years). This
    comprehensive strategy requires the effective enforcement of State
    laws, limitations on the placement of vending machines, banning of
    self-service displays, restrictions on tobacco advertising that appeals
    to children, and strong community mobilization efforts. It also
    requires the coordination and cooperation of resources at the Federal,
    State and local levels.
        Question. HHS took two-and-one-half years to review fewer that 400
    comments filed in response to its proposed regulations implementing the
    Synar Amendment. The FDA, however, reviewed 710,000 comments filed in
    response to its proposed tobacco regulations in only a little more than
    a year. How can you explain this vast discrepancy, especially since the
    Synar Amendment was passed by Congress, while FDA was never given
    congressional direction to promulgate its tobacco regulations?
        Answer. Youth tobacco use is a public health issue of major
    importance to the Department and to SAMHSA. We believe limiting youth
    access to tobacco is only one of many strategies that are necessary to
    reduce youth tobacco use. Many factors contribute to youth tobacco use,
    including access, availability, and appeal. A comprehensive approach is
    necessary to reduce youth tobacco use. The Synar Amendment is one
    aspect of that approach.
        As such, SAMHSA received and carefully analyzed over 3,000 comments
    from the public and sought to develop a reasonable regulatory scheme.
    We tried to be as thorough as possible in our planning, review, and
    implementation process in order to ensure a strong, quality regulation.
        In particular, the comments prompted us to rethink our approach to
    implementation of the Synar Amendment to allow for greater state
    flexibility and to address the issue of unfunded mandates. We tried to
    balance flexibility for the states with the need for scientifically
    sound methodology in conducting inspections and collecting data. We
    believe this ultimately resulted in a quality regulation that will
    reduce minor's access, while providing states with the flexibility they
    need.
        Since the Synar Amendment was passed in 1992, we have taken our
    responsibility seriously and continue to do so. Following the release
    of the regulation in 1996, we conducted two technical assistance
    conferences and provided states with three guidance documents to assist
    with sampling, inspection, and implementation strategies. We have been
    in regular contact with the states and have worked closely with states
    having difficulties implementing the regulation. We anticipate that all
    states will have a failure rate of no more than 20 percent by the year
    2003 and that this will, in turn, reduce youth tobacco use by
    approximately 15-20 percent.
                                     ______

                     Questions Submitted by Senator Inouye
                   research centers in minority institutions
        Question. What has been the changes in co-funding for the RCMI
    program since fiscal year 1995 and what has been the budgetary impact
    of the downturn in co-funding on the RCMI program since that time?
        Answer. Collaborative efforts between NCRR's RCMI Program, the NIH
    Office of Research on Minority Health, and the National Institute of
    Allergy and Infectious Diseases (NIAID) provided co-funding
    respectively for fiscal years 1995, 1996 and 1997 as follows: $5.37
    million in 1995; $2.33 million in 1996; and $2.25 million is
    anticipated in fiscal year 1997. This downturn in co-funding has
    necessitated making the RCMI program more competitive. This is
    consistent with the goals of the program since each RCMI faculty
    investigator is expected to generate independent research support in
    order to decrease dependence on the RCMI support. This frees up
    resources; the grants received by RCMI faculty generate resources to
    support RCMI-provided core facilities through fees for services.
        Question. What efforts are under way to increase co-funding
    available to the RCMI program?
        Answer. As indicated above, NIH does not anticipate an increase in
    co-funding support for the RCMI program in fiscal year 1997. However,
    plans are evolving between the RCMI community, NCRR, and six NIH
    Institutes (the National Institute of Neurological Disorders and
    Stroke, the National Institute of Mental Health, the National Institute
    on Alcohol Abuse and Alcoholism, the National Institute of Child Health
    and Human Development, the National Eye Institute, and the National
    Institute on Drug Abuse) to develop partnerships with RCMI
    institutions. Cofunding to develop NIH's neuroscience initiative at
    RCMI institutions is a possibility.
        Question. One of the elements in all of the RCMI applications is
    pilot projects. What happens to the faculty investigators after they
    are no longer supported by the RCMI program?
        Answer. Approximately one-third of the support provided through the
    RCMI program is for pilot projects. Support for these pilot projects is
    augmented through collaborative efforts with the National Institute of
    Allergy and Infectious Diseases (NIAID), which co-funds many of the
    AIDS and AIDS-related research projects. The published RCMI program
    policy allows support for these pilot projects for five years. From our
    experience with the RCMI program, as well as other programs, this
    should allow sufficient time for researchers to develop productive
    laboratories that can compete for independent research support.
        Question. Are there ways within the NCRR that these individuals
    could be provided an intermediate step to more competitive grants?
        Answer. The NIAID has expanded its collaboration with the RCMI
    grantee community by providing transitional support for many of the
    RCMI investigators that they have supported to collaborate with some of
    their more experienced investigators.
        Question. Is there adequate representation of RCMI institutions on
    the RCMI review committee?
        Answer. Presently, two out of sixteen members of the Research
    Centers in Minority Institutions (RCMI) Review committee are from RCMI
    institutions. Proposed plans are to increase RCMI membership to three.
    Present and proposed minority representation on the committee exceeds
    60 percent. Since the purpose of the review committee is to review the
    scientific merit of the proposals and to evaluate the overall
    organization and functioning of these centers, NIH regards the proposed
    membership (nearly one-fifth) from RCMI institutions as adequate to
    provide appropriate input into the review process about RCMI
    institutions.
        Question. Since service on study sections is very educational, are
    faculty from the RCMI institutions routinely used as members of all the
    NCRR committees and site visit teams?
        Answer. Members of standing committees are selected according to
    the expertise needed to review applications submitted to that
    particular committee, paying attention to appropriate representation of
    women and minorities and geographical distribution of the members. For
    membership on review committees, candidates must have an established
    publication record and active peer-reviewed grant support, except for
    administrative reviewers.
        Currently, the RCMI Review Committee has two members out of sixteen
    from RCMI Institutions; the General Clinical Research Centers (GCRC)
    Review Committee also has two; the Comparative Medicine (CM) Review
    Committee has one; and the Scientific and Technical Review Board on
    Biomedical and Behavioral Research Facilities has one member. The
    Special Emphasis Panel (SEP) does not have a set membership. When SEPs
    review applications for NCRR, faculty from RCMI and other minority
    institutions are regularly asked to participate in the review process.
    Representation may vary between one and eight per meeting, depending on
    availability and nature of applications that are being reviewed.
    However, to avoid conflict of interest, as part of the NIH peer review
    policy, program directors and principal investigators of competing
    applications may not serve on the committee when their application is
    being reviewed. Minorities, including those from RCMI institutions, are
    invited to serve as Temporary Members on the standing committees to
    augment the expertise needed to review grant applications.
        Members of site visit teams are selected for their expertise in a
    narrow or broad area of biomedical and behavioral sciences, paying
    attention to selection of women and minorities, within our ability to
    identify such scientists. For the most part, site visit team members
    are expected to be established scientists, physicians, and
    veterinarians with an excellent publication record, who have no
    conflict of interest with the institution to be site visited or
    protocols to be reviewed. Current peer-reviewed support is preferred,
    but is not required.
        In addition, architects, computer specialists, and hospital
    administrators may be invited on site visits as needed. The CM Review
    Committee does very limited numbers of site visits, one or two per
    year, and minority investigators, some of whom are from RCMI
    institutions, are routinely asked to participate in the site visit.
    Site visit teams for the RCMI Review Committee always have several RCMI
    institution representatives on the site visit team. The GCRC Review
    Committee has the most site visits, and scientists from minority
    institutions are invited to participate. The two members from RCMI
    institutions actively participate in site visit. The Office of Review
    invites scientific reviewers from RCMI institutions who have the
    appropriate scientific expertise for protocols under review and are
    available to attend the site visit when they are scheduled.
        Question. How many institutions are now supported by the RCMI
    clinical initiative?
        Answer. The purpose of the RCMI Clinical Initiative is to assist
    eligible grantees with affiliated medical schools to develop an
    expanded capacity for clinical research by providing some of the
    resources that are needed to develop the relevant infrastructure. The
    long-range objectives of this initiative are to (1) assist the
    participating institutions to conduct clinical research which will
    improve the health of the Nation's citizens, especially racial and
    ethnic minorities; (2) enhance the clinical research capacity of RCMI-
    eligible institutions with affiliated medical schools; (3) position
    these medical schools to compete successfully for clinical research
    support; and (4) enhance the probability of success in competing for
    resources to establish a productive, free-standing Clinical Research
    Center (CRC).
        Six RCMI grantees with affiliated medical schools are supported
    through this RCMI clinical initiative, including Meharry Medical
    College; the Morehouse School of Medicine; the Medical Sciences campus
    of the University of Puerto Rico; Universidad Central del Caribe;
    Charles R. Drew University; and the University of Hawaii. These awards
    have five year commitments. Another RCMI grantee institution with an
    affiliated medical school, Howard University, is now receiving support
    for developing its clinical research capacity through NCRR's General
    Clinical Research Centers Program. Thus, seven of the eight medical
    schools are receiving support for expanding their participation in
    clinical research from NCRR.
        Question. What is the annual cost and what impact has this had on
    the RCMI program since no additional funds have been requested for this
    special initiative that the Congress urged?
        Answer. The costs for RCMI clinical this initiative were $4.5
    million in fiscal year 1996 and $4.6 million in fiscal year 1997. This
    initiative is a natural outgrowth of the mission of the RCMI Program
    and a logical redirection of program funds supports this initiative.
        Question. Since the RCMI program is in its eleventh year, are steps
    on the way to evaluate the program? Please provide some examples of
    additional scientific highlights that have emerged from the grantee
    institutions?
        Answer. The NCRR has requested funds from the 1 percent program
    evaluation set-aside to evaluate the RCMI program in fiscal year 1997.
    We hope to assess the areas of success and failure so that the program
    can be modified to take the fullest advantage of the best ways to
    enhance competitiveness.
        The following are some examples of recent scientific
    accomplishments at RCMI institutions:
        RCMI investigators, collaborating with scientists at Albert
    Einstein College of Medicine, have demonstrated significant inhibition
    of HIV-1 replication by nontoxic doses of L-cycloserine (L-CS) in a
    CD4+ cell line. They discovered possible mechanisms of action, which
    appears to be indirect, via interactions with cellular components
    rather than through direct antiviral action. It appears that drugs that
    interfere indirectly with viral production are less likely to be
    rendered ineffective due to rapid viral mutation. The in vitro
    effective dose of L-CS was also nontoxic in animal experiments. These
    results are encouraging and may lead to new strategies for viable
    complementary or alternative treatments for HIV-1 infections in humans.
        Other RCMI investigators, studying the mechanisms involved in the
    major increases in programmed cell death observed in peripheral blood
    lymphocytes (PBLs) in HIV-positive patients, found a high correlation
    between the extent of apoptosis and impaired production of the cytokine
    lymphotoxin. This study supports the hypothesis that all HIV-positive
    patients have defective immune systems and provides evidence that
    apoptosis is an important factor contributing to the massive depletion
    of CD4+ cells during the progression of the HIV-disease. These
    observations represent an important step in further understanding the
    mechanisms ultimately responsible for apoptosis induction in lymphoid
    cells from HIV-positive patients, which could eventually lead to
    effective preventive or therapeutic treatments.
        RCMI faculty using molecular endocrinology techniques, including
    hybridization histochemistry, have identified the cells making the
    hormone relaxin. They have shown also that relaxin acts on the cells of
    the fetal sac surrounding the baby by producing enzymes which degrade
    the structural collagen in the membrane. If this sac breaks, the baby
    is born prematurely. Therefore, too much relaxin production may result
    in weakening of the membrane, predisposing it to premature rupture and
    consequent premature birth. These studies provide insights at the
    molecular level which are essential to developing strategies for
    preventing preterm births, which occur with significantly higher
    frequencies in minority populations in this country.
        Scientists in the RCMI-supported neuroscience program at Meharry
    Medical College, exploring the functions of a newly isolated brain
    peptide, have found that nociceptin appears to inhibit pain. The new
    findings suggest that nociceptin's effects on brain neurons are similar
    to those of other opioid molecules that relieve pain, which is
    critically important in addressing both economic and quality of life
    issues associated with chronic and intractable pain.
        Question. What percent of the NCRR budget has a direct affect on
    minority institutions? How does this compare to National Institute of
    General Medical Sciences where the MARC and MBRS programs are housed?
        Answer. About 8 percent of the NCRR appropriation has a direct
    impact on minority institutions. About 6 to 7 percent of the National
    Institute of General Medical Sciences total appropriation has a direct
    impact on minority institutions.
        Question. Since the budget request for construction is $16 million
    less than what was appropriated last year, is this based on a reduced
    need that is evident by a decrease in the number of applications?
        Answer. While there is a strong demand by universities and
    institutions for funds for research facility construction, NIH chose to
    reflect its higher priority for the support of research project grants.
    Much if not all of this demand is met through the $3 billion the
    Federal Government spends on indirect costs of research grants, which
    support research facility construction requested in the fiscal year
    1998 budget.
        Question. Does this mean that there was limited participation in
    the grantsmanship workshop which the Congress urged to level the
    playing field for minority institutions by providing them the proper
    ``coaching''?
        Answer. The grantsmanship workshop which was conducted by NCRR in
    December was attended by representatives of over 70 institutions,
    including seven from Centers of Emerging Excellence. The NCRR has
    received 80 applications for the fiscal year 1997 program.
                                     ______

                     Questions Submitted by Senator Bumpers
                                  medicaid cap
        I understand you plan to use a portion of the savings from the
    Medicaid cap for several children's health initiatives. One is the
    proposal to provide continuous Medicaid coverage for children--that is,
    to allow states to provide continuous coverage for one year after
    eligibility is determined, regardless of a change in the family's
    income status.
        Question. How many states will exercise this option, and how many
    children will be affected?
        Answer. There is no way to determine how many states will
    participant in this program. However, we estimate that about half of
    the eligible children--1 million--will benefit from these provisions.
        Question. What is the estimated cost of this proposal?
        Answer. Our cost estimate is $3.7 billion over five years, with an
    initial cost of $3 billion in 1998.
                                   head start
        Question. You are proposing another large increase in funding for
    Head Start. I am concerned again this year about the fact that spending
    on this program has grown dramatically over the past 5 years without a
    parallel growth in the number of children served. Since 1992, Head
    Start funding has grown from $2.2 billion to nearly $4 billion--an 80
    percent jump in spending. But the enrollment has increased from 30
    percent to just 40 percent of the eligible children. I realize some
    funds have been devoted to quality improvements, but how do you explain
    such a disappointing rate of enrollment growth in the face of such
    generous increases in funding?
        Answer. Over the past five years, the Department has worked to
    balance the goal of reaching more of the unserved children who need
    Head Start services with the goal of ensuring that Head Start programs
    provide effective, high quality services. In 1993, the ``Report of the
    Advisory Committee on Head Start Quality and Expansion'' laid out a
    series of recommendations that included improving staffing and career
    development, improving the management in local programs, providing
    better facilities, providing longer services and strengthening the role
    of research. Steps were also taken to improve Federal oversight and
    better assure program accountability. The report also recommended
    expanding services in a way that better meets the needs of children and
    families, such as providing more full-day services so families can
    enter the work force.
        The expansion and improvement of Head Start has been an important
    goal of the President and the Congress in recent years. The program has
    received $1.8 billion in increased funding since 1992. Approximately 40
    percent that amount has been used for statutorily mandated increases to
    (1) offset the rise in the cost of living, (2) improve program quality
    and (3) fund training and technical assistance activities. Beyond these
    mandates, grantees were given the authority to use approximately 10
    percent of the total funding increase to make further needed
    improvements in program quality. These improvements included:
      --increasing staff salaries and benefits, for example, average
            teacher's salaries have increased by over 25 percent to
            approximately $17,500;
      --hiring needed and better qualified staff to work with families;
      --improving facilities and replacing equipment such as school buses;
            and
      --extending the program day for more than 100,000 children to allow
            children to remain in Head Start for longer periods of time.
        The remaining half of the funding increases since fiscal year 1992
    have being used to serve additional children, increasing enrollment
    from 621,078 to a projected 800,000 children in fiscal year 1997, an
    increase of almost 30 percent. Approximately 22,000 of these additional
    children are infants and toddlers, who are provided Head Start services
    under the authority of the recently established Early Head Start
    program.
        In fiscal year 1998, we are proposing to increase enrollment by
    another 36,000 children above the projected fiscal year 1997 enrollment
    of 800,000. This will enable us to continue our progress towards
    meeting the President's goal to serve 1 million children in Head Start
    by fiscal year 2002.
                            global polio eradication
        I want to commend the administration again this year, and
    particularly you and Dr. Satcher, for the fine work you have done on
    global polio eradication. My only concern about the program at this
    point is in the area of staffing. Last year we were given a commitment
    by CDC to increase staffing the polio by 25 FTEs. I understand that CDC
    intends to honor the commitment but that there has been some
    administrative delay.
        Question. Is this the case, and when do you anticipate allocating
    those new positions?
        Answer. Immunization, in particular global eradication remains a
    high priority at CDC. CDC has allocated 25 additional FTEs to the
    National Immunization Program in fiscal year 1997 for global polio
    eradication.
                               vaccine excise tax
        The Administration has an unusual request regarding excise tax for
    pediatric vaccines. As I understand it, you are proposing to exempt the
    federal government from its statutory obligation to pay excise tax to
    the vaccine injury compensation fund for the vaccine it purchases, but
    continue to require state and local governments as well as private
    providers to pay taxes into the fund. Further, you score this proposal
    as a savings and then assume that the savings will be reallocated for
    discretionary spending. I have a number of questions about this
    proposal, which, I understand, did not originate with your Department:
        Question. What is the justification for exempting federal purchases
    from the current statutory requirement?
        Answer. The proposal to exempt the Federal government from the
    current statutory requirement of paying excise tax on purchases of
    vaccine is proposed for one year only. With this exemption, CDC would
    only need $365 million in fiscal year 1998, as opposed to $427.1
    million--and still meet all the vaccine needs for States. The excise
    tax for vaccines is intended to provide funding to compensate children
    and their families who suffered certain adverse events following
    immunization. The vaccine compensation trust fund currently has a
    balance of over $1 billion. Therefore, excise tax revenue from non-
    federal vaccine purchases would be more than sufficient to compensate
    potential claims.
        Question. How would the savings referred to in the budget be
    scored--wouldn't a reduction in payments by CDC also be treated as a
    reduction in receipts to the compensation fund and therefore yield no
    overall budget savings?
        Answer. Because the President's Budget proposes to exempt Section
    317 from payment of these taxes, funding for its operations can be
    reduced by this amount without affecting the amount of vaccine the
    program purchases. Receipts lost by the exemption of Section 317 from
    the excise tax are not scored, since the effects on tax receipts of
    changes to discretionary programs normally are not scored under the
    Budget Enforcement Act.
        Question. Have you done calculations to determine how long it will
    take under your proposal for the compensation fund to show significant
    losses and jeopardize the viability of the injury compensation program?
        Answer. As stated above, this proposed exemption is requested for
    one year only. As a result of the sizable balance in the vaccine
    compensation trust fund, currently $1 billion, excise tax revenue from
    non-federal vaccine purchases would be more than sufficient to
    compensate potential claims. At the beginning of the next fiscal year
    the Administration expects that federal payment of excise tax would
    resume, and the substantial balance in the compensation fund would
    continue to grow. As a result, the viability of the injury compensation
    program would not be jeopardized in any way.
        Question. Have you consulted with parent and child health advocate
    groups about the significance of federal government abrogating its
    responsibility for contributing to the injury fund?
        Answer. As stated earlier, the proposed exemption is requested for
    one year only. To date, since this proposed exemption is limited to one
    year child health advocate groups have not been consulted regarding
    this request. It is expected that federal payments will resume in
    fiscal year 1999. The sizable balance in the vaccine compensation trust
    fund, currently $1 billion, excise tax revenue from non-federal vaccine
    purchases would be more than sufficient to compensate potential claims.
    As a result, the Administration is committed to protecting the
    viability of the injury compensation program.
        Question. What is the status of the ``flat tax'' proposed by the
    administration during the last Congress?
        Answer. The Administration is no longer pursuing the ``flat tax''
    proposal.
                             price cap on vaccines
        Question. I understand that CDC has used an administrative
    mechanism to lift the price cap on a number of vaccines covered under
    the Vaccine for Children authorization legislation. What are the
    criteria for determining whether the price cap should be lifted?
        Answer. There is no administrative mechanism for lifting the price
    cap and CDC has never ``lifted'' the price cap, but rather has not
    applied the price cap for some vaccines, because the product in
    question was not being purchased as of May 1, 1993. CDC examines the
    language of contracts in effect in May 1993 to determine if it is
    necessary to change the description of product indications in order to
    receive the desired product(s). If a change in the language is needed,
    the CDC believes it is negotiating a price for a new vaccine, i.e., ``a
    vaccine for which the CDC had no contract in effect under section
    317(j)(1) of the Public Health Service Act as of May 1, 1993, in
    children 2 months of age and older.'' Therefore, imposition of a price
    cap would be inappropriate in accordance with paragraph (C) of 42
    U.S.C. 1396s, cited below.
        Negotiation of Discounted Price For Current Vaccines.--With respect
    to contracts entered into under this subsection for a pediatric vaccine
    for which the Centers for Disease Control and Prevention has a contract
    in effect under section 317(j)(1) of the Public Health Service Act as
    of May 1, 1993, no price for the purchase of such vaccine for vaccine-
    eligible children shall be agreed to by the Secretary under this
    subsection if the price per dose of such vaccine (including delivery
    costs and any applicable excise tax established under section 4131 of
    the Internal Revenue Code of 1986) exceeds the price per dose for the
    vaccine in effect under such a contract as of such date increased by
    the percentage increase in the consumer price index for all urban
    consumers (all items; United States city average) from May 1993 to the
    month before the month in which such contract is entered into.
        Negotiation of Discounted Price For New Vaccines.--With respect to
    contracts entered into for a pediatric vaccine not described in
    subparagraph (B), the price for the purchase of such vaccine shall be a
    discounted price negotiated by the Secretary that may be established
    without regard to such subparagraph.
        Question. Please describe the review and decision process within
    CDC and the Department for making such determinations.
        Answer. CDC examines the language of contracts in effect in May
    1993 to determine if it is necessary to change the description of
    product indications in order to receive the desired product(s). When
    CDC makes a decision about whether the price cap should be applied to
    the product, the Department is notified.
        Question. Does CDC consider a change in FDA labeling or a change in
    the recommended use of the vaccine a legitimate basis for lifting the
    cap?
        Answer. In accordance with Paragraph (B) of 42 U.S.C. 1396s, there
    has been no instances in which the CDC has renegotiated a price cap for
    a vaccine which under contract language of May 1, 1993 could have been
    purchased for the new indication or labeling change. No ``exceptions''
    have been made because of changes in recommendations or FDA labeling
    changes. Indeed, most vaccines have undergone these kinds of changes
    since the passage of OBRA 1993. Had the CDC been renegotiating price
    caps based upon such factors, virtually none of the vaccines being
    purchased today would fall under a price cap.
                                     ______

                      Questions Submitted by Senator Kohl
           unlicensed child care service under the welfare reform law
        The welfare reform law encourages states to put welfare recipients
    in unpaid, unsupervised child care community service jobs. It's hard to
    believe, but there are no training or licensing standards for these
    child care workers and the care could occur in unsupervised settings.
    Probably no other community service job would be allowed without
    supervision, yet the assumption is that it's O.K. for child care
    workers to go it alone.
        Scientific research on early childhood development is proving again
    and again that to maximize a child's learning potential, they must have
    access to productive, educational care in their early year's. If we are
    ever going to break the cycle of poverty, we must not skimp on the
    quality of child care.
        Question. There is nothing wrong with welfare recipients becoming
    child care providers, but shouldn't there at least be some level of
    training and supervision?
        Answer. We agree. Not only should there be appropriate training and
    supervision, but providers must also have an interest in providing
    child care. Welfare recipients who do not want to be child care
    providers and who have not received proper training may not provide
    appropriate care. Research has demonstrated that child care providers
    who are committed to taking care of children offer more responsive and
    overall better quality care than those who are not committed to the
    profession of child care. Group child care is work that takes
    dedication, skill and specialized preparation.
        Although there is no federal training standard for child care, the
    Child Care and Development Fund program requires that each state, at a
    minimum, set standards for health and safety training for providers.
    There are a number of recognized credentialing programs for providers
    in the field of early care and education that states can draw from in
    developing their standards. The Head Start program, for example,
    includes performance standards requiring each classroom to include at
    least one teacher who has a Child Development Associate credential, an
    early childhood degree, or a state early childhood certificate.
        In addition, the American Public Health Association and the
    American Academy of Pediatrics, under a grant from the Maternal and
    Child Health Bureau, has developed the Caring for Our Children--
    National Health and Safety Performance Standards: Guidelines for Out-
    of-Home Child Care Programs. The National Performance Standards is a
    comprehensive set of recommended national standards for health and
    safety of children in child care that includes training of child care
    providers. This document represents a consensus of the various
    disciplines involved with child care, with particular emphasis on the
    health specializations.
        Question. Do you believe that this provision should be amended to
    require training and supervision for welfare-to-work activities that
    involve child care?
        Answer. We believe appropriate training is critical for all child
    care providers. At a minimum, all child care providers should meet
    State requirements for training and supervision, particularly
    pertaining to health and safety. To create a planning and regulatory
    analytical tool from the comprehensive volume of National Health and
    Safety Performance Standards, the Maternal and Child Health Bureau
    recently developed Stepping Stones to Using Caring for Our Children.
    Stepping Stones identifies those standards most needed for the
    prevention of injury, morbidity and mortality in child care settings.
    Stepping Stones supports state licensing and regulators, state child
    care, health and resource and referral agencies as well as other public
    and private organizations that need to focus their efforts in order to
    target limited resources effectively. These standards provide a
    critical and sensible starting point for state administrators planning
    policy and regulations revisions. We recommend that all States adopt
    the Maternal and Child Health Standards.
        Question. Congress will be considering legislation to make
    technical corrections to the welfare law. Do you plan to include
    changes to this provision in the Administration's recommendations?
        Answer. No, we did not propose technical corrections to require
    training and supervision for those child care workers. While we believe
    training is critically important, we did not believe that such an
    amendment would be considered strictly a technical correction.
                             child support savings
        As you know in December 1996, the HHS' Inspector General's (HHS-IG)
    office issued a report regarding noncustodial parents incorrectly
    claiming custody of children on Federal income tax returns. The report
    suggested that we could solve this problem administratively and cost-
    effectively by exchanging information between IRS and the Office of
    Child Support Enforcement (OSCE). Furthermore, the report suggested
    that the necessary information is readily available, or will be by the
    end of 1997, on most state database systems.
        Question. What problems or concerns have you encountered as an
    administrator of the current tax refund offset program?
        Answer. The program runs smoothly and has been very productive. For
    tax year 1995, the Federal government collected a record of over $1
    billion in delinquent child support by intercepting income tax refunds
    of parents owing past due support. The amount was 23 percent higher
    than the previous year, and up 51 percent since 1992.
        Question. What would be the pros and cons of exchanging custodial
    data between the IRS and the OCSE?
        Answer. The major advantage of providing the IRS with data from the
    Office of Child Support Enforcement is improved tax compliance. Such
    information will allow the IRS to improve compliance with tax laws
    involving duplicate or erroneous claims for dependency exemptions,
    earned income tax credits and head of household filing status. We
    believe that the use of this data as part of ongoing revenue protection
    programs could prevent a significant portion of the $1.4 billion per
    year that is lost to the tax system through these inappropriate
    filings. We also believe that such a program could have a significant
    positive effect on payment of child support on the part of non
    custodial parents. Once it is made clear to these individuals that
    child support payments must be made before any tax advantages are
    allowed, compliance with support orders may increase.
        The main disadvantage is the administrative cost of obtaining the
    data and providing it to IRS. However, we believe this cost would be
    relatively small compared to the savings that would be achieved. The
    State Child Support Enforcement agencies are working toward
    implementing their child support management information systems. When
    these systems are certified, States will have centralized, computerized
    files containing the information needed by IRS, at least for the VI-D
    population. We recommend using only data from certified systems. This
    will not only reduce the cost, but will also ensure the accuracy of the
    data. Additionally, with the implementation of the Federal Case
    Registry of Child Support Orders, as required by The Personal
    Responsibility and Work Opportunity Reconciliation Act of 1995 (Public
    Law 104-193), some information will be available from State court
    orders on all dependent children. Through appropriate planning,
    information for dependent children can be available to aid in the
    construction of appropriate revenue protection programs by the IRS.
        Question. What additional statutory authority would be required for
    OCSE, in coordination with State agencies, to compile this data for use
    in a reimbursable program modeled after the current child support
    refund offset program?
        Answer. Legislation is needed to allow transmission of the
    necessary data to IRS from a privacy standpoint--i.e., that the privacy
    of personally identifiable information about the children and their
    parents would not be violated by the transfer of data to IRS. Language
    could be added to minimize the amount and safeguard the privacy of the
    data transmitted. Above and beyond that, requirements for OCSE to
    transmit the data and for IRS to receive and use it for tax collection
    oversight would also be needed.
        It is important to note here that we would not necessarily
    recommend a program modeled on the current child support refund offset
    program. The IRS is best suited to determine the most efficient way to
    use this data; and we would defer to IRS to propose the specific
    approach to be used.
                  national infertility prevention program/cdc
        The National Infertility Prevention Program currently does not
    allocate funding to Regions and States in proportion to the need. For
    example, Region V States currently have 19 percent of the total number
    of women ages 14-44, yet it receives only 9 percent of the total
    allocation for Infertility Prevention.
        Question. With the plan to expand the National Infertility
    Prevention Program nationwide, how does CDC propose to allocate the
    funding to the Regions and States to achieve an overall balance in
    funding?
        Answer. The Infertility Prevention Program was initiated as a
    result of the Preventive Health Amendments of 1992. At that time, the
    CDC estimated the annual cost of a nationwide program to reduce
    preventable infertility by controlling chlaymdial infections to be $175
    million. This included an estimated $90 million in federal, public
    sector funds, with the recognition that a substantial portion of
    chlamydia detection and treatment currently occurs in the private
    sector and that an augmented public-private prevention partnership must
    continue into the future.
        Initial chlamydia prevention efforts have been implemented in a
    phased approach due to limited resources. To date, of the $90 million
    required for public sector coverage, only $13.2 million has been
    appropriated to begin to build chlamydia prevention efforts.
        A demonstration project focusing on screening for chlamydia in
    reproductive age women was initiated in 1988 in PHS Region X (AK, ID,
    OR, WA) and by 1995 had reduced the rates of chlamydial infection by 65
    percent. In 1994, through a combination of grants to state STD
    prevention programs and an interagency agreement with the Office of
    Population Affairs, CDC supported expansion of the successful model in
    Region X on a demonstration basis to three additional PHS regions, a
    total of 20 states (III--DE, DC, MD, PA, VA, WV; VII--IA, KS, MO, NE;
    VIII--CO, MT, ND, SD, UT, WY). In 1995, with a total budget of $12.2
    million, services were expanded to initiate capacity building and small
    pilot projects in family planning clinics for infertility prevention
    services in the six remaining regions (30 States). These remaining 30
    states include large, highly populated areas such as states in Region
    V, as well as states such as California, New York, and Texas.
        In fiscal year 1995, with a total budget of $12.2 million, Region V
    states (IL, IN, MI, MN, OH, WI) received approximately $0.5 million to
    support initiation of the collaborative service delivery model of
    providing chlamydia screening and treatment services to women attending
    family planning and STD clinics. By 1997, with a total budget of $13.2
    million, Region V states will receive at least $1 million, almost a
    doubling in funding for Infertility Prevention services with very
    limited increases in overall national program funding. CDC remains
    committed to providing increased funds to Regions and States with the
    greatest unmet need for chlamydia screening and treatment services, as
    new resources become available.
                                     ______

                      Questions Submitted by Senator Byrd
           appalachian laboratory for occupational safety and health
        Question. What is the number of Full Time Equivalents for the
    Division of Safety Research and the Division of Respiratory Disease
    Studies at this facility in fiscal year 1997 and the number projected
    for fiscal year 1998?
        Answer. The fiscal year 1997-98 Full Time Equivalents for the
    Divisions of Safety Research and Respiratory Disease Studies are as
    follows:

      FISCAL YEAR 1997-98 FULL-TIME EQUIVALENTS FOR THE DIVISIONS OF SAFETY
                    RESEARCH AND RESPIRATORY DISEASE STUDIES
    ------------------------------------------------------------------------
                                                       Fiscal year--
     Name of division at Morgantown Research -------------------------------
                   Laboratory                   1997 FTE's      1998 FTE's
    ------------------------------------------------------------------------
    Division of Safety Research.............              86          \1\ 96
    Division of Respiratory Disease Studies.             125             125
    ------------------------------------------------------------------------
    \1\ The fiscal year 1998 proposal includes +10 FTE's and $2.5 million
      for the firefighters initiative outlined in the President's Budget.

        Question. Please provide the funding level for the above mentioned
    Divisions in fiscal year 1997, and the projected level for fiscal year
    1998.
        Answer. The fiscal year 1997-98 funding levels for the Divisions of
    Safety Research and Respiratory Disease Studies are as follows:

      FISCAL YEAR 1997-98 FULL-TIME EQUIVALENTS FOR THE DIVISIONS OF SAFETY
                    RESEARCH AND RESPIRATORY DISEASE STUDIES
    ------------------------------------------------------------------------
                                                     Fiscal year--
       Name of division at Morgantown    -----------------------------------
             Research Laboratory                            1998 President's
                                            1997 estimate        budget
    ------------------------------------------------------------------------
    Division of Safety Research.........       $12,250,000   \1\ $14,750,000
    Division of Respiratory Disease
     Studies............................        11,219,600        11,219,000
    ------------------------------------------------------------------------
    \1\ The fiscal year 1998 proposal includes +10 FTE's and $2.5 million
      for the firefighters initiative outlined in the President's Budget.

               the new occupational safety and health laboratory
        Question. How many Full-Time Equivalents are at this facility in
    fiscal year 1997, and what is the projected number of FTE at this
    facility for fiscal year 1998?
        Answer. As of December 31, 1996, NIOSH had filled 180 of the 303
    positions authorized for the advanced laboratory. Openings exist for
    engineers, industrial hygienists, laboratory technicians, and
    statisticians in the Health Effects Laboratory Division. Leadership
    positions have been filled, facilitating recruitment for the remaining
    positions. We anticipate that the facility will be fully staffed by the
    4th quarter of fiscal year 1997.
        Question. Please furnish the funding level required for staffing
    and research for fiscal year 1998 at this facility.
        Answer. In the fiscal year 1998 President's Budget a budget of $36
    million and 303 FTE's have been requested to support this facility.
             national institute for occupational safety and health
        Question. The Senate Report accompanying the fiscal year 1997
    Department of Labor, Health and Human Services, Education, and Related
    Agencies Appropriations bill, urges the National Institute for
    Occupational Safety and Health (NIOSH) to be prepared to report to the
    Committee in fiscal year 1998 on implementing testing and certification
    of emergency response personnel. Is it feasible for NIOSH to perform
    the testing and certification of personal protective clothing and
    equipment for emergency personnel and firefighters?
        Answer. NIOSH intends to complete its feasibility study on
    performing the testing and certification of personal protective
    clothing and equipment for emergency personnel and firefighters by June
    1.
        Question. If so, at what cost?
        Answer. The cost estimates are part of the feasibility study which
    will be completed by June 1.

                              subcommittee recess

        Secretary Shalala. Thank you very much, Senator.
        Senator  Faircloth. We will do that. I thank you for being
    with us this morning.
        Secretary Shalala. Thank you very much. It is always nice
    to see you.
        Senator  Faircloth. It has been a pleasure to talk to you.
    Thank you.
        The subcommittee will stand in recess to reconvene at 2
    p.m., Wednesday, April 16 in room SD-124. At that time we will
    hear testimony from the Secretary of Education, Hon. Richard
    Riley.
        [Whereupon, at 12 noon, Tuesday, March 4, the subcommittee
    was recessed, to reconvene at 2 p.m., Wednesday, April 16.]

      DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
              RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1998

                                  ----------

                           WEDNESDAY, APRIL 16, 1997

                                           U.S. Senate,
               Subcommittee of the Committee on Appropriations,
                                                        Washington, DC.
        The subcommittee met at 2 p.m., in room SD-124, Dirksen
    Senate Office Building, Hon. Arlen Specter (chairman)
    presiding.
        Present: Senators Specter, Cochran, Craig, Byrd, Harkin,
    Bumpers, Reid, Kohl, and Murray.

                            DEPARTMENT OF EDUCATION

                      Office of the Secretary of Education

    STATEMENT OF HON. RICHARD RILEY, SECRETARY OF EDUCATION
    ACCOMPANIED BY THOMAS P. SKELLY, DIRECTOR, BUDGET SERVICE

                       opening remarks of senator specter

        Senator Specter. Good afternoon, ladies and gentlemen. It
    is 1\1/2\ minutes past 2 o'clock, the starting time for this
    meeting of the Subcommittee on Labor, Health and Human
    Services, and Education of the Appropriations Committee.
        We are honored today to have the distinguished former
    President pro tempore, former chairman of the Appropriations
    Committee, currently the No. 2 man in seniority in the
    conscience of the Senate, Senator Robert Byrd of West Virginia,
    and I want to comment about his presence before I do anything
    else which I think is the appropriate protocol.
        This afternoon our subcommittee continues its series of
    hearings on the President's fiscal year 1998 appropriations
    request. We are pleased once again to welcome the distinguished
    Secretary of Education, Richard Riley, to discuss the budget
    for the Department of Education for the upcoming fiscal year.
        The Department of Education's budget request for
    discretionary spending for fiscal year 1998 totals $29.1
    billion, an increase of $2.9 billion, or 11 percent over fiscal
    year 1997. Mr. Secretary, your budget includes some new
    initiatives, including $5 billion for school construction, an
    increase of $260 million for the America Reads Challenge, and
    an increase of $300 on the maximum Pell grant award, an array
    of tax proposals, as well as increases in the core education
    programs.
        I look forward to working with you in the coming months to
    craft an appropriations bill which maintains the commitment to
    a balanced budget while keeping education funding at the
    highest possible levels.
        All of the funds contained within this subcommittee's
    jurisdiction are by far most importantly directed toward the
    investment in education in the Nation's youth. Over the past
    several years, Senator Harkin and I have fought the large cuts
    in education spending proposed by the House and have worked
    together to increase the Federal investment in education.

                               prepared statement

        There is a statement which will be included, without
    objection, in the record, and we will economize on time and
    note the bipartisan cooperative effort which Senator Harkin and
    I have made. We added a $2.6 billion amendment in 1996 which
    broke the logjam to enable the subcommittee's bill to be
    enacted, and over the past several years, Senator Harkin and I
    have worked jointly with the very able staff to eliminate or
    consolidate some 134 programs to liberate $1.5 billion to
    allocate resources on a priority basis to education and health
    research, NIH, which is where I think our priorities are, along
    with worker safety.
        [The statement follows:]

                  Prepared Statement of Senator Arlen Specter

        This afternoon, the Subcommittee on Labor, Health and Human
    Services and Education continues its series of hearings on the
    President's fiscal year 1998 appropriations requests.
        We are pleased to once again welcome Secretary Richard
    Riley to the subcommittee to discuss the budget for the
    Department of Education for the upcoming fiscal year.
        The Department of Education's budget request for
    discretionary spending for fiscal year 1998 totals $29.1
    billion, an increase of $2.9 billion or 11 percent over the
    fiscal year 1997 amount. Mr. Secretary, your budget includes
    some new initiatives, including $5 billion for school
    construction, an increase of $300 in the maximum Pell grant and
    an array of tax proposals as well as increases in the core
    education programs. I look forward to working with you in the
    coming months to craft an appropriations bill that maintains
    the commitment to a balanced budget while keeping education
    funding at the highest possible level.
        Mr. Secretary, of all of the funds contained within this
    subcommittee's jurisdiction, by far the most, direct,
    rewarding, and important investment we can make is in the
    education of this Nation's youth.
        Over the past several years, Senator Harkin and I have
    fought the large cuts in education spending proposed by the
    house and have worked together to increase the Federal
    investment in education. We first eliminated 126 programs
    within this subcommittee's jurisdiction that were either
    duplicative or had proven to be ineffective. We then captured
    the funds from these program eliminations and combined them
    with savings achieved in other areas of the budget. Funds were
    then redirected to increase our investment in the core
    elementary and secondary and higher education programs,
    including increasing the maximum Pell grant. In fiscal year
    1996, we offered the amendment on the Senate floor that broke
    the logjam on funding and restored $1.7 billion in education
    funding. Then again, in fiscal year 1997, Senator Harkin and I
    fought hard during consideration of the Senate budget
    resolution and through the appropriations process to ensure
    adequate funding for education programs, yielding an increase
    of $3.5 billion in Federal education spending for that fiscal
    year. Again this year we will continue to invest in the future
    of this Nation's youth.
        Today we are also pleased to have a second panel of
    witnesses who will testify following Secretary Riley. I want to
    welcome to the subcommittee Governor Bob Miller of Nevada,
    Governor George Voinovich of Ohio, Dr. Bruce Perry, professor
    of child psychiatry at the Baylor College of Medicine, and Mr.
    Robert Reiner of Castle Rock Entertainment.
        These witnesses will give testimony on the importance of
    early childhood education with a focus on the critical
    formative period from birth to age three. I want to commend you
    gentlemen for your hard work in this area and in launching the
    ``I am your child'' campaign. We look forward to hearing about
    the efforts underway across this Nation to promote family and
    community involvement in a child's development and the reports
    by early childhood experts on the research findings on brain
    development for children in the very earliest stages of life. I
    am particularly interested to hear your views on the connection
    between neglected children and its consequences in later years
    such as criminal behavior, dropping out of school and teen
    pregnancy.

        Senator Specter. I would be pleased now to yield to our
    distinguished senior Democrat, Senator Byrd.
        Senator Byrd. Mr. Chairman, you are very thoughtful and
    courteous to do so. I just came by today as an ex officio
    member, and I will await a later turn.
        Senator Specter. Fine. Thank you very much, Senator Byrd.
        We have been joined by Senator Cochran who is a senior
    member on this subcommittee.

                     prepared statement of senator cochran

        Senator Cochran. Mr. Chairman, thank you. I am going to put
    a statement in the record with your permission and join you in
    welcoming the Secretary and thanking him for his cooperation
    and assistance to our committee as we review this budget
    request.
        [The statement follows:]

                   Prepared Statement of Senator Thad Cochran

        Mr. Chairman, the administration's proposal that every
    child in America should be able to read well and independently
    by the end of third grade is laudable. We recognize the
    necessity of basic reading skills in order to meet life
    challenges in a more confident and successful manner.
        I am disturbed by the data that suggest at least 40 percent
    of our children are not reading as well as they should by the
    end of third grade. Additionally, research studies show that
    fewer than one child in eight who is failing to read by the end
    of first grade ever catches up to grade level.
        In 1985, responding to parents, teachers and other child
    advocates, the Health Research Extension Act (Public Law 99-
    158) was passed by Congress and signed into law by the
    President. As a result of the act, the National Institute of
    Child Health and Human Development (NICHD) initiated a
    collaborative research network with multidisciplinary research
    programs to study genetics, brain pathology, developmental
    process and phonetic acquisition. NICHD has spent over $100
    million to follow about 2,500 young children in rigorous
    scientific research to understanding not only the causes but
    the consequences of reading problems and related cognitive
    difficulties.
        The results are in. The bitter debate over ``whole language
    approach'' vs. ``phonetic drill approach'' need not continue.
        NICHD's results conclude that both literature and phonics
    practice are necessary for impaired and unimpaired children
    alike. Techniques for early identification of problem readers
    and intervention strategies are now known as a result of this
    research, but many administrators, teachers, tutors, and
    parents are not aware of the key principles of effective
    reading instruction.
        The NICHD findings underscore the need to do a better job
    of teacher training. Researchers found that fewer than 10
    percent of teachers actually know how to teach reading to
    children who don't learn reading automatically.
        I hope the administration will include in its reading
    initiative the NICHD research findings and help ensure they are
    used in federally supported education programs.

                    summary statement of hon. richard riley

        Senator Specter. Secretary Riley, we welcome you again. It
    has been a pleasure to work with you for the past--this is the
    fifth year of your secretaryship, and it has been a cordial,
    cooperative working relationship and we look forward to that
    again this year. The floor is yours. Your full statement will
    be made a part of the record, and you may proceed as you
    choose.
        Secretary Riley. Thank you very much. If I could do that,
    Mr. Chairman, and Senator Byrd, Senator Cochran.

                carnegie foundation task force on young children

        I am pleased, of course, to answer any questions you have
    asked in your letter about early childhood education, which of
    course is something that I have taken a great interest in. And
    I would point out to you, Mr. Chairman, that I was the chairman
    of the Carnegie Corporation Task Force on meeting the needs of
    young children that you referred to in your letter. I had to
    give that chairmanship up when I took this job and I had to
    give up about everything else I belonged to also. [Laughter.]
        But I have been seriously involved in that issue of early
    childhood for a long time.
        I am also pleased to say that the President and the First
    Lady have also been deeply involved in early childhood issues.
    I actually first worked with the First Lady on the southern
    regional education board task force on infant mortality over 15
    years ago, and the upcoming White House Conference on Early
    Childhood is a culmination of a lot of years of concern and
    effort on the part of the President and the First Lady.

               fiscal year department of education budget request

        Now let me turn to the education budget. For fiscal year
    1998, we are asking for a total of $29.1 billion, as you
    indicate, in discretionary funds, an increase of $2.9 billion,
    or 11 percent, over the 1997 level, of course, all that being
    part of the balanced budget provisions sent by the White House.

                             new budget initiatives

        This budget request seeks to respond to recordbreaking
    enrollment increases with a significant investment for two new
    initiatives, the America Reads Challenge and the school
    construction initiative.
        President Clinton is also proposing tax cuts that would
    save students and families an estimated $36 billion in
    postsecondary education expenses over a 5-year period.

                   goals 2000--raising educational standards

        Our effort to improve education begins with a focus on high
    standards. We are requesting $620 million for our Goals 2000
    Program, an increase of $129 million over 1997. I would like to
    thank you, Mr. Chairman, especially for your leadership in
    making Goals 2000 be effectively used in all 50 States. Your
    leadership was very helpful in that. The standards movement I
    am absolutely convinced is one of the most important things
    that this country could move forward with. We are doing it in
    all 50 States. Goals 2000 serves that purpose directly, and I
    am very proud of that and I appreciate your leadership in doing
    it.
        Goals 2000 also has an early childhood connection that
    often goes unnoticed. We have established 28 parent resource
    centers, including one in Washington, PA, that allow parents in
    poor areas to help other parents to be better parents. This
    type of assistance is a very direct way to help new parents in
    their children's preschool years, and we plan to open 14 more
    of these centers this year.

                            america reads challenge

        Another way that we are trying to raise standards is to
    maintain a strong focus on reading and literacy. We want all of
    our young people to be reading well by the end of the third
    grade. That is why we are proposing the America Reads
    Challenge, led by Carol Rasco, and my submitted testimony
    outlines our budget request in some detail.
        I believe there is a strong link between this initiative
    and the new thinking on early childhood development. The years
    before a child arrives at school cannot be spent in just any
    fashion. It is not simply a waiting period before a child is
    dropped off at school one day to start learning. It does not
    work that way. Good parents do make a powerful difference. To
    my way of thinking, it makes a great deal of sense to have the
    parents as first teachers component of our America Reads
    Challenge.
        When I was Governor of South Carolina back in the 1980's,
    we found that 40 percent of our entering first graders were
    simply not ready for academic work. Perhaps not coincidentally
    we also found about 40 percent of all of our students were
    dropping out of school before graduating from high school.
    There was a direct connection there that got our attention.

               increases for programs that develop reading skills

        I want to emphasize that the assistance offered through the
    America Reads Challenge supplements the reading instruction
    provided in the regular classroom, and that is why we have
    asked for increased support for existing programs that make a
    significant contribution to improving reading skills such as
    title I, Even Start, bilingual education, adult literacy, and
    special education.

                                    title i

        For title I, we are asking for $7.5 billion, an increase of
    $347 million. Here again we have a very strong link to early
    childhood development. Our whole school approach in title I
    allows schools to help with the transition from Head Start to
    kindergarten and the first grade. Research from our Even Start
    Program tells us that children whose parents have taken
    parenting education increased their vocabulary. In addition,
    our early intervention efforts under IDEA, the Infants and
    Families Program, will enable us to reach some 191,000 children
    with disabilities.

                       national voluntary testing program

        Another strong focus in our effort to raise standards is
    our proposal for challenging but voluntary testing in fourth
    grade reading and eighth grade mathematics. Right now 40
    percent of our young children are not reading as well as they
    should, and this Nation is below the international average when
    it comes to eighth grade math.
        The test will be based on the widely accepted fourth grade
    National Assessment for Education Progress--NAEP--in reading,
    and the eighth grade NAEP and TIMSS--the international math and
    science test--in mathematics. That eighth grade test would
    include algebra.

                professional development and teaching standards

        Better teaching is also high on our agenda. We cannot raise
    standards unless we have better teachers, and that is why we
    are including $360 million for our Eisenhower Professional
    Development Program, up $50 million from 1997.
        We are also asking for a $16 million increase for the
    National Board for Professional Teaching Standards. We want
    100,000 master teachers in our Nation's classrooms. And that is
    why I will be hosting a national forum this week in attracting
    and preparing and retaining teachers for the 21st century. As a
    nation we have a very real question before us: How do we
    improve the quality of teaching at a time when we have to raise
    quantity? Two million new teachers in the next 10 years must be
    trained. Too often in the past we have lowered teaching
    standards to meet the demand for more teachers, and now is the
    time to get it right, to step back and rethink how we recruit,
    prepare, and support America's teachers.

                     educational technology and innovation

        A third strong emphasis in our budget is technology and
    innovation. We are requesting $500 million to support
    educational technology.

                                charter schools

        The President's budget also doubles funding for public
    school choice through our support of charter schools. A $100
    million request would support the start-up for as many as 1,100
    new schools created by teachers and parents and other community
    members.

                         school construction initiative

        Finally, I urge the Congress to recognize that many school
    districts are very hard pressed because of rising enrollments I
    referred to. You do not get a lot of learning done when 30 to
    40 young people are crowded into a single classroom and often
    with a roof leaking or whatever. That is why the President is
    requesting a one-time appropriation of $5 billion in 1998 to
    jump start school construction. Our goal is to stimulate at
    least $20 million in new construction or renovation projects.

                           federal pell grant program

        Now, let me turn one moment to higher education. President
    Clinton seeks to significantly expand college access for low-
    income students, while providing new help to that part of the
    middle class that seems to have been forgotten and is
    struggling to pay for college. The request includes $7.6
    billion, an increase of $1.7 billion, or 29 percent, to support
    two significant changes in the Pell Grant Program.
        The first is an increase in the maximum Pell grant award to
    an all-time high of $3,000, up from $2,700 in 1997.
        The second is an expansion of the eligibility of
    independent students with no dependents, and this will allow an
    additional 218,000 students to be eligible to participate in
    the Pell Grant Program.

                          postsecondary tax proposals

        The President's budget also includes two major tax
    initiatives that together would save more than 12 million
    postsecondary students and their families an estimated $4
    billion in 1998.
        American's HOPE scholarship proposal would help make 2
    years of postsecondary education universally available by
    providing a tax credit of up to $1,500 a year during the first
    2 years of college.
        President Clinton is also offering a middle-income tax
    deduction proposal that would allow students and families to
    deduct up to $5,000 in postsecondary tuition and fees from
    their taxable income, and this deduction would rise to $10,000
    under this proposal in 1999. More than 8 million students would
    benefit from the tax deduction in 1998, with total savings
    reaching $17.6 billion by 2002.
        Our data tells us that low- and middle-income students are
    less likely than higher income students to earn bachelor's
    degrees within 5 years. One of the main reasons these students
    drop out of college is the lack of money. What we have here is
    a forgotten part of the middle class I referred to that could
    use our help.
        Other postsecondary education priorities include a $27
    million increase for work-study, an additional $25 million for
    TRIO to support almost 37,000 more aspiring students, and our
    $6 million request for the Advanced Placement Fee Program that
    will allow many more low-income students the opportunity to
    reach for excellence.

                               prepared statement

        In conclusion, I point to history in considering our
    proposed investment in education. For most of the industrial
    age, we used the Tax Code to encourage business to invest in
    plant and equipment. For the information age, what I call the
    education age, I believe we should provide incentives,
    including tax incentives, that encourage people to invest in
    themselves by getting a quality education. This type of
    investment policy, Mr. Chairman and members of the committee,
    is the best insurance we can have for long-term economic growth
    and a growing middle class that is eager to participate in our
    free enterprise system and strengthen our democracy.
        Thank you, Mr. Chairman. I will be happy to respond to
    questions.
        [The statement follows:]
                     Prepared Statement of Richard W. Riley
        Mr. Chairman and Members of the Subcommittee, I am pleased to have
    this opportunity to talk about the President's 1998 budget request for
    the Department of Education. I have a statement that I would like to
    submit for the record, Mr. Chairman, and then I will briefly summarize
    it for the Subcommittee.
        Let me begin by saying how pleased I am that education is a top
    priority for both President Clinton and the Congress. The Nation is
    already responding to the President's call for action on education in
    his State of the Union address, and I believe that we here in
    Washington need to give the American people as much help as we can in
    their efforts to demand more of schools and students.
        This is my fourth Congressional hearing this year, and I have been
    greatly impressed by the broad and bipartisan agreement among Members
    in both Houses of Congress on what we need to do in education. The
    President's commitment to high standards; expanding public school
    choice; safe, disciplined, and drug-free schools; bringing technology
    into the classroom; improving the quality of teaching; and increasing
    access to postsecondary education is shared by nearly everyone.
        There are, of course, some differences on how best to achieve these
    goals, but they are not insurmountable differences and I am hopeful
    that we will work together this year in a bipartisan fashion to move
    the country forward in education.
                            the president's request
        I have often said that money alone is not the answer to the
    challenges we face in education. Motivated students, talented teachers,
    and supportive parents and communities are what really leads to
    outstanding performance in the classroom. But money makes a difference
    too, particularly at a time when a record number of students are in our
    Nation's classrooms. This is the Education Age, and America must have
    an education budget right for the times.
        The President's budget lives up to our education challenge. For
    fiscal year 1998, the President is asking for a total of $29.1 billion
    in discretionary funds for the Department of Education, an increase of
    $2.9 billion or 11 percent over the 1997 level.
        The President's budget also includes a significant investment of
    mandatory funds for two new initiatives: the America Reads Challenge
    and the School Construction initiative. And to complement the education
    funds in our budget and help Americans pay for college, President
    Clinton is proposing tax cuts that would save students and families an
    estimated $36 billion over five years.
        The President's budget directs new resources into four priority
    areas: putting standards of excellence into action, improving reading
    for all Americans, providing help to schools and students with special
    needs, and expanding access to higher education.
                  putting standards of excellence into action
        As I said in my State of American Education speech earlier this
    year, it is not enough to have high expectations or set challenging
    standards. We must put standards of excellence into action. This is the
    first priority of the President's budget for education.
        Over the past four years, President Clinton has worked with
    Congress to build bipartisan support for effective assistance to states
    and communities using standards of excellence to improve their schools.
    The 1998 budget would expand this assistance.
        For Goals 2000, the cornerstone of Federal support for schools and
    communities that are working to raise standards, we are requesting $620
    million, or $129 million over the 1997 level. This increase would
    permit grants to an estimated 16,000 schools, or one-third more than
    the 12,000 currently receiving Goals 2000 assistance.
        We are also requesting $6 million for the Advanced Placement Fee
    program. This program would support higher academic standards by paying
    some or all of the cost of advanced placement tests for low-income
    students, thus encouraging these students to challenge themselves and
    take tough courses.
        The President's budget includes $400 million for School-to-Work
    Opportunities, $200 million each from the Departments of Education and
    Labor. These funds would help all 50 States to fully implement their
    strategies for preparing students for work and further education.
        In addition, we would nearly double funding for Educational
    Technology. The $500 million request emphasizes linking rural and
    inner-city schools to the Internet, and would help us reach the
    President's goal of connecting all schools to the Information
    Superhighway by the year 2000.
        The President's budget would promote innovation and accountability
    and expand the range of choices available to parents and children
    within public school systems by nearly doubling funding for Charter
    Schools. The $100 million request would support planning and start-up
    costs for as many as 1,100 new schools created by teachers, parents,
    and other community members.
        We also are seeking new resources to improve the quality of
    teaching. The request includes $360 million for Eisenhower Professional
    Development State Grants, up $50 million over 1997, to help teachers
    better deliver instruction in the core subjects. And the budget would
    provide a $16 million increase for the National Board for Professional
    Teaching Standards to greatly speed up the development of standards and
    assessments in over 30 teaching fields. This increase also would enable
    teachers to go through the rigorous National Board evaluation process--
    a key step in identifying and rewarding master teachers.
        One of the most important proposals for putting standards of
    excellence into action--one that did not make it into our budget
    documents but about which you are well aware--is the plan to develop
    and support the administration of new national tests in 4th-grade
    reading and 8th-grade mathematics.
        As you know, President Clinton announced this plan in his State of
    the Union address to the Congress. The decision to support such testing
    was made after our 1998 budget documents had gone out for printing, and
    reflects the President's conviction that after much emphasis on higher
    standards in recent years, it was time to put such standards into
    action in every State, school district, and school.
        President Clinton believes that we will never reach standards of
    excellence until we have ``recognized high standards for math and
    science and other basic subjects that are national in scope, measured
    by national and international standards, adopted locally, implemented
    locally, but nationally recognized and nationally tested throughout the
    United States.'' And while he acknowledges that Federal involvement in
    such testing should be limited, he doubts that it will happen ``unless
    we get out here and beat the drum for it and work for it.''
        As a result, we are now proposing to use 1997 and 1998 funding
    available through the Fund for the Improvement of Education (FIE) to
    develop and begin pilot-testing of the national tests in reading and
    mathematics. FIE funds for this purpose will be reallocated from
    planned development assistance to States working on their own
    assessments. Additional funding to support full administration of the
    tests by the States in the spring of 1999 will be included in the 1999
    budget request.
        The tests will be based on the widely accepted National Assessment
    of Educational Progress (NAEP), with the math test also linked to the
    Third International Mathematics and Science Study. The Department has
    been seeking guidance in developing the tests from parents, teachers,
    governors, and State and local leaders. These tests will show how well
    students are meeting rigorous standards and how well they compare with
    their peers around the country and the world. They also will help
    parents know if their children are mastering critical basic skills
    early enough to succeed in school and in the workforce.
        I hope we do not cloud our children's future with arguments that
    are not really relevant about Federal government intrusion. Reading is
    reading and math is math, as Governors in Michigan, Maryland, and North
    Carolina have recognized by already accepting the President's challenge
    to participate in these voluntary national tests. I urge you to join me
    in encouraging other states and school districts to follow their
    example. Many of our children, schools, and States may not make the
    grade at the beginning, but these tests will be a very serious tool for
    showing them where and how they need to improve.
                       helping all americans to read well
        Our second priority is helping all Americans to read well. Learning
    begins with reading, but 40 percent of fourth graders read below the
    ``Basic'' level on the NAEP reading test. Research shows that if
    students can't read well by fourth grade, their chances for later
    success in school are significantly reduced.
        The goal of the America Reads Challenge is to ensure that all
    children read well and independently by the end of the third grade. The
    President's budget includes $260 million in mandatory funding for two
    components of the Challenge: America's Reading Corps and Parents as
    First Teachers. We plan a total of $1.75 billion for this initiative
    over the next five years, with the Corporation for National and
    Community Service contributing an additional $1 billion.
        Most of the funds would be used to begin enlisting and training one
    million volunteer tutors for the Reading Corps, who would work with
    teachers and provide reading assistance after school, on weekends, and
    during the summer for children in grades K-3 who need assistance.
        I want to emphasize here that the assistance offered through the
    America Reads Challenge would supplement the reading instruction
    provided in the regular classroom. We will continue to support existing
    programs that make a significant contribution to improving reading
    skills, such as Title I and Special Education. Our budget includes
    increases for each of these programs.
        A Parents as First Teachers component of America Reads will support
    programs that assist parents in helping their children to read. These
    programs put a strong emphasis on helping children before they enter
    school. And that is so important, because new scientific findings about
    the brain tell us that it is essential for children to start learning
    as early in life as possible. Before I came to the Department of
    Education, I had the privilege of serving as chairman of the Carnegie
    Foundation Task Force that collected these findings in a report called
    Starting Points: Meeting the Needs of Our Youngest Children.
        I was especially pleased, therefore, to learn that you will be
    discussing early childhood development with a panel that follows my
    testimony, because I believe this new research has important
    implications for how we teach our children. The White House Conference
    on Early Childhood Development and Learning that begins tomorrow will
    also help to raise awareness of how critical the early years are for
    learning.
        This conference builds on President Clinton's investment in
    children and families, which has included a 25-percent increase in
    children's research at the National Institutes for Health, a 43-percent
    increase in funding for Head Start, and raising participation in the
    Woman, Infants and Children Supplemental Nutrition Program by 1.7
    million or 30 percent.
        At the Department of Education, we have increased funding for the
    Special Education Infants and Families program by 48 percent, helped to
    establish Parent Information and Resource Centers in 42 States, and
    encouraged greater understanding of the important role families play in
    education through our Partnership for Family Involvement in Education.
        I think we have made a good start in supporting the child
    development and learning in the earliest years, but I am certain that
    the White House Conference--as well as this afternoon's hearing--will
    suggest additional steps we might take in this important area. I
    welcome those suggestions, and would be pleased to work with the
    Committee to help make sure our youngest children receive the support
    they need for later success in school.
        The 1998 request also provides increases for other programs focused
    more specifically on reading. We are seeking a $6 million increase for
    Even Start, for a total of $108 million. This would expand local family
    literacy programs that combine early childhood education for preschool
    children with instruction in basic literacy skills for their parents.
        Our $199 million request for Bilingual Education, up $42 million
    from the 1997 level, would help ensure that students who speak a
    language other than English receive the extra help they need to learn
    to read English. And a $42 million increase for Adult Education State
    Grants would help adult Americans improve their literacy skills.
             extra help for schools and students with special needs
        All across the nation, schools are struggling to make room for new
    students while they provide services for students with special needs.
    These students include low-achieving and limited-English-proficient
    students, and students with disabilities. Helping these schools and
    students is the third priority in our 1998 budget request.
        For Title I Grants to Local Educational Agencies, we are asking for
    $7.5 billion, an increase of $347 million, to help low-achieving
    students in the poorest school districts meet the same challenging
    standards expected of all children. The request would target a larger
    share of Title I resources on communities and schools with the highest
    concentrations of children from low-income families.
        The budget would provide $3.2 billion for Special Education Grants
    to States, an increase of $141 million or 4.5 percent over the 34-
    percent increase in 1997. The request would help States cover the
    increased costs of serving additional children with disabilities.
        We also recognize the additional costs faced by school districts
    that serve large numbers of recently arrived immigrant students. To
    help districts pay these costs, the request includes $150 million for
    Immigrant Education, a $50 million or 50-percent increase over the 1997
    level.
        Children cannot be expected to reach high standards in schools
    where they are threatened by drug abuse and violence. To help fight
    these threats, we are asking for $620 million for the Safe and Drug-
    Free Schools programs. This is an increase of $64 million, or nearly 12
    percent, over the 1997 level.
        I want to be clear here that I am very concerned about the enormous
    variation in the effectiveness of the drug prevention activities funded
    by this program. Our schools must do a better job of getting the anti-
    drug and anti-violence message across to young people. We know a lot
    about what works when it comes to drug prevention, and we also know
    that the proven models are not being used as much as they should. That
    is why we are proposing appropriations language for the Safe and Drug-
    Free Schools program that would require the use of proven, research-
    based approaches to drug and violence prevention.
        The Department also is proposing a new initiative to support safe
    learning environments for our children. The $50 million After-School
    Learning Centers program would help hundreds of rural and inner-city
    public schools stay open after school hours and serve as safe,
    neighborhood learning centers where students can do their homework and
    obtain tutoring and mentoring services.
        In addition, the President is requesting a one-time appropriation
    of $5 billion in 1998 to stimulate state and local efforts to repair
    and modernize school facilities, particularly in urban areas, which
    often have the greatest need.
        The new School Construction initiative would pay for up to half the
    interest on school construction bonds or similar financing mechanisms,
    with a target of stimulating at least $20 billion in new construction
    or renovation projects. Projects could include emergency repairs to
    ensure health and safety, technology upgrades, building new schools to
    serve growing enrollments, ensuring access for disabled individuals,
    and improving energy efficiency.
                         making college more affordable
        The point of our efforts to put standards of excellence into
    action, improve reading, and help students with special needs is to
    raise our expectations of educational achievement for all Americans. As
    a result, more and more people will be reaching for higher education to
    meet their educational and career goals. That is why the fourth
    priority in our 1998 budget is to make college more affordable.
        President Clinton is proposing a combination of budget and tax
    initiatives for 1998 that would significantly expand college access for
    lower-income students, while providing new assistance to working
    families and middle-class families struggling to pay for college.
        The request includes $7.6 billion, an increase of $1.7 billion or
    29 percent, to support two significant changes in the Pell Grant
    program. The first is an increase in the maximum Pell Grant award to an
    all-time high of $3,000, up from $2,700 in 1997. The second is an
    expansion of the eligibility of independent students with no
    dependents. This need-analysis change would make 218,000 additional
    independent students--generally defined as over age 24--eligible for
    Pell Grants.
        We also are proposing changes to the student loan programs that
    would save billions of dollars for both students and taxpayers. Our
    proposal would cut origination fees from 4 percent to 2 percent for
    need-based loans, and to 3 percent for other loans, thus saving 4
    million low- and middle-income students $2.6 billion over five years.
    We would further reduce Federal and borrower costs by lowering the
    interest subsidy to lenders and the interest rate for students by 1
    percentage point during in-school, grace, and deferment periods--when
    lender costs are very low. Finally, we would save taxpayers $3.5
    billion over five years by streamlining the guaranty agency system to
    clarify the federal government's role as sole guarantor of all student
    loans and by linking agency fees to performance in collecting on
    defaulted loans.
        In addition to these changes in Department programs, the
    President's budget includes two major tax initiatives that together
    would save more than 12 million postsecondary students and their
    families an estimated $4 billion in 1998.
        The America's HOPE Scholarship proposal would help make two years
    of postsecondary education universally available by providing a tax
    credit of up to $1,500 each year during the first two years of college.
    Students would have to stay drug-free and maintain at least a ``B-
    minus'' average (2.75 GPA) to qualify for the tax credit in their
    second year of postsecondary study. We expect 4.2 million students to
    benefit from HOPE Scholarships in 1998, with total savings to students
    and families reaching $18.6 billion by 2002.
        President Clinton is also proposing an education and job training
    tax deduction. This would allow students and families to deduct up to
    $5,000 in postsecondary tuition and fees from their taxable income. The
    deduction would rise to $10,000 in 1999. More than 8 million students
    would benefit from the tax deduction in 1998, with total savings
    reaching $17.6 billion by 2002.
        Some have argued that HOPE Scholarships would do little to increase
    access to postsecondary education, and instead would merely subsidize
    those who would attend college anyway. I believe such critics are
    ignoring evidence that we need to improve access to college for both
    low- and middle-income students, who have much lower rates of
    participation in postsecondary education than higher-income students.
    In 1994, only 45 percent of high school graduates from low-income
    families and 58 percent from middle-income families went directly to
    college, compared to 77 percent of students from high-income families.
        Our data also show that low- and middle-income students are less
    likely than higher-income students to earn bachelor's degrees within 5
    years, and one of the main reasons that students drop out of college is
    lack of money. HOPE Scholarships can help close both of these gaps--in
    access and completion--by changing the expectations of many Americans
    who still do not consider a college education to be within their reach
    and by putting more resources into the hands of students and families.
        Other postsecondary education priorities in the Department of
    Education's budget include a $27 million increase for Work-Study to
    keep us on course toward funding 1 million work-study jobs by the year
    2000, a $25 million increase for TRIO to provide outreach and support
    services to almost 37,000 more students, and $132 million to give
    Presidential Honors Scholarships to the top 5 percent of graduating
    students in every high school in America.
                                   conclusion
        The President's 1998 budget request supports real and dramatic
    improvement in education at all levels. I believe the Nation is ready
    to do what needs to be done to raise educational achievement for all
    Americans to the levels needed for success in the 21st century. This
    budget will help, and I hope you will give it your fullest
    consideration.
        Thank you, and I will be happy to respond to any questions.

                           introduction of Associate

        Secretary Riley. Let me point out Tom Skelly, who is with
    me, my Director of Budget Service.
        Senator Specter. Thank you very much, Mr. Secretary, and we
    welcome Mr. Skelly here again.
        Mr. Secretary, we have a great many questions for you. As
    usual, our time is going to be limited.
        We are having an unusual second panel today which we are
    featuring with Gov. Bob Miller who currently serves as chairman
    of the National Governors Association, along with Gov. George
    Voinovich--Governor Miller from Nevada, Governor Voinovich from
    Ohio--along with Dr. Bruce Perry and Mr. Rob Reiner, chair and
    founder of the I Am Your Child Program. Mr. Reiner is in town
    for other activities today and activities tomorrow at the White
    House, and we thought this would be a good opportunity to focus
    on the issue of education for the very young.
        We will proceed now with 5-minute rounds for the members.

                   early child development research findings

        My first question to you, Mr. Secretary, relates to this
    growing body of information that children have fairly developed
    aptitudes by the age of 3, which I found somewhat surprising. I
    focus with particularity on two grandchildren which my wife and
    I were recently the beneficiaries of: Sylvi, 3; and Perry, 1.
    Their mother is a product of the new age and has them in school
    already. Perry at 1 goes to music school. I would like your
    insights into that approach.
        Secretary Riley. Well, I think the fascinating research
    that was recently documented in several major magazines and
    newspapers and TV articles of all kinds very clearly shows the
    importance of brain development at a very early age. I guess it
    ought not to be such a shock to us, the fact that hundreds of
    thousands of these positive connections develop for young
    children in their brains when they have the kind of nurturing,
    the kind of attention that your children and my children are
    giving to our grandchildren. It is very exciting research and
    findings.
        Our Department, when we reauthorized OERI, Mr. Chairman,
    provided for an Institute on Early Childhood, and there is now
    a National Center to Enhance Early Development and Learning
    working under that institute which we think will provide some
    very, very helpful additional information. It is looking at
    some of the specifics, the connection between this early
    stimuli and how it impacts kindergarten and school and
    thereafter. So, I am very interested and excited about it.

                                tax initiatives

        Senator Specter. Mr. Secretary, I applaud the initiatives
    on tax credits and tax deductions. Those will, of course, go to
    the Finance Committee, but I think that it is very important to
    set the foundation so that every young man and young woman who
    wants to go to college and graduate school can do so, with
    education being our best capital investment, and beyond the
    young people, adult education as well.
        I also commend the addition on charter schools, all within
    the public school system, as a supplement to provide some
    competition with the public school systems.

              public schools' use of parochial schools' facilities

        We have a great many questions, Mr. Secretary, which we are
    going to be submitting for the record, and in the remaining
    time on my round, I want to explore with you a subject that is
    controversial but, I think, has very substantial potential, if
    it can be worked out, and it relates to a request which the
    Congress made to your Department to provide a report on public
    urban schools and the possibility of utilizing facilities from
    parochial schools.
        To summarize in a nutshell, within the past year Cardinal
    Bevalaqua of Philadelphia visited me on another subject and
    raised the issue about 25,000 vacant seats in the parochial
    schools of Philadelphia where the average cost of education is
    $7,000. The Cardinal stated that he would be willing to make
    those seats available to public school children for $1,000.
    That was at about the same time that New York City with Mayor
    Guliani was considering a similar proposal.
        There has been some suggestion that the parochial schools
    would take the most difficult of the public school children to
    educate. Another suggestion is to take them by lottery.
        The issues are complex, obviously, on the question of
    separation of church and state. Ultimately New York City has
    proceeded with this program with public funding--with private
    funding, rather, as opposed to public funding. There are some
    cases, none really dispositive of this kind of a complex issue,
    suggesting that public funds may be used in certain ways.
        I know you are going to be submitting a more detailed
    response by the September date which we had requested, but I
    would be very much interested in your preliminary thinking on
    that subject today.
        Secretary Riley. Well, I think the determination in New
    York, as you point out, was that they had some real concern
    about public funds being used to pay for scholarships into
    parochial schools.
        I strongly believe in quality private and parochial
    schools, and we work very closely with them in a lot of ways
    through title I, and we are trying in every way we can to make
    that more workable and to make it work better for them.
        You have to be very, very careful with the constitutional
    issue in my judgment, Mr. Chairman, on that particular issue.
    When you get into private funds, that is a different situation.
    Private funds--people can do basically what they want to do
    with them. But again, if you go into public schools and you are
    talking to students and parents who might not be well educated,
    with the idea of moving them from a public school into a
    parochial school, really again, I think you have to be very
    careful with regard to having them involved in a religious
    learning experience.
        Senator Specter. Do you think there is a way it can be
    worked out?
        Secretary Riley. I think with private funds. It is a very
    interesting question, and I think all of us need to be
    pondering that. But how you choose the students, how they end
    up there, and whether they belong to that religion or not, are
    issues that are central to the question when you are taking
    kids out of a public school setting and putting them in a
    private or parochial setting. So, I wish I could answer yes or
    no. I would say this, I would have very serious concerns about
    how it is done to make sure the constitutional issue is
    avoided.
        Senator Specter. Thank you very much, Mr. Secretary.
        The Senator from West Virginia, Mr. Byrd.
        Senator Byrd. Mr. Chairman, if I might suggest, I will wait
    until the member of the subcommittee has reached his turn.
        Senator Specter. Very well, the Senator from Mississippi,
    Mr. Cochran.

                       opening remarks of senator cochran

        Senator Cochran. Mr. Chairman, one of the issues that I
    think we are all aware of and would like very much to work to
    influence is the problem of college costs and the difficulty
    that continues to mount for parents and students alike to meet
    these ever-increasing costs. I have been impressed with the
    administration's attention to this, even though I do not agree
    with the limited approach it is taking to deal with it with the
    tax changes which do not seem to have enough support in the
    Congress to make it into law. But I do applaud the effort and
    the leadership to cause others to look at alternatives.

                prepaid tuition plans--one answer to rising cost

        One of the alternatives is a prepaid tuition program which
    I know the Secretary is aware of. Our State of Mississippi has
    just passed legislation to authorize a prepaid tuition program
    where you can pay current costs by joining the program now and
    so that increases over the future years will not work to make
    it impossible for those who have children who will be college
    age later to meet those costs.

                    increase in tuition versus median income

        Here is, in a nutshell, the problem. Over the last 15
    years, I am told that college tuition costs have increased 234
    percent while median income has increased only 82 percent. In
    our State the cost of just 1 year at a 4-year college rose 215
    percent between 1985 and 1995.

                       mississippi's prepaid tuition plan

        Under this new tuition plan, I think we are going to see a
    lot more participation by parents and the business sector in
    helping to encourage early investments in college education,
    helping to make it possible for more students to get a college
    education.
        We are introducing legislation here that will make the
    internal buildup of value of those funds tax-free, much like an
    IRA, and we hope that will be a big help too.
        I wonder whether or not this kind of initiative is the kind
    of initiative the administration is supporting and what efforts
    you are making to try to help encourage other States to do like
    our State and 16 others have done to put this kind of law on
    the books.
        Secretary Riley. Well, the answer, Senator, is absolutely
    we favor prepaid plans. You have to be careful about how those
    are done. States have done them differently, some working very
    well, some working fairly well. So, we would be very happy to
    provide technical kinds of advice to States on how to set these
    plans up and would advise Congress on any benefit here. But I
    strongly would favor the tax-free approach that you refer to. I
    think that makes great sense.

                          federal student aid approach

        I would urge you to look at our full higher education
    approach. Pell grants cover the very poor, as you well know,
    and are kind of the backbone of really all Americans having
    some chance to go to college. To extend this we have proposed a
    Pell grant increase and an eligibility expansion. Then on top
    of that, where the Pell grant lets off, we have the HOPE
    scholarship, which is a $1,500 tax credit, to cover middle-
    income students, and then after 2 years, the up to $10,000 tax
    deduction for lifelong learning.
        If you take those three as a package and put with them
    efforts to encourage savings, as you propose, and the prepaid
    tuition plans, which are very helpful, and then the IRA changes
    which make great sense too--to expand upon those so you can
    withdraw funds without penalty--I think it will go a long way
    toward helping all Americans have a good chance at college. So,
    I would urge you to take another look at those.

               america reads challenge and nichd research results

        Senator Cochran. Well, we will review them very carefully.
        In connection with the administration's reading initiative,
    I hope that you will look at the results of research that was
    done by the National Institute of Child Health and Human
    Development. This was done after a bill was passed in 1985
    called the Health Research Extension Act. It resulted in
    collaborative research to study genetics, brain pathology,
    developmental processes, and other matters to try to learn more
    about how young children learn to read and why some of them do
    not, why some do it better than others; $100 million has been
    spent on that research and 2,500 young children were studied in
    a way that no other research has undertaken to do.
        But anyway, the point is: techniques for early
    identification of problem readers and intervention strategies
    are now known as a result of this research, but many
    administrators--I would say very few--or teachers or parents or
    tutors know about these results or are aware of what the key
    principles are that were developed so that effective reading
    instruction can occur.
        I hope that any effort to push the reading initiative,
    again a subject which is very important--I hope the
    administration will include the research findings by the NICHD
    in any federally supported instruction programs that you
    support.
        Secretary Riley. Well, thank you, Senator, and that is a
    solid suggestion. Carol Rasco, I am told, has met with the
    researchers, and she is very much involved in that. She is
    heading up the America Reads Challenge, and she is very much
    into that and I will be myself. That is a grand suggestion.

                 national writing project and teacher training

        Senator Cochran. The only other question I have is a
    complaint about your failure to put in the budget the national
    writing project. This is a project that the National Council of
    Teachers of English recognized last year as one of the most
    successful teacher training programs in America; 44 States have
    sites. It was funded several years ago as a result of a
    bipartisan congressional initiative which we started here in
    the Senate and the House went along with it.
        We hope you will take another look at that. We are going to
    try to convince this committee and others in Congress to
    support funding. It is a modest amount of money, but I get the
    impression that the administration does not put money in the
    program in its budget just because it did not think it up. It
    was a congressional initiative. But it is a really fine program
    from everything I have heard about it, and I hope the
    administration will take a close look at our suggestion.
        Secretary Riley. Well, thank you. Senator, as you know, we
    had it zeroed out by our recommendation some 4 years ago. Our
    emphasis this year has been on reading, really, and math, but
    again----
        Senator Cochran. This is teaching them how to read. This is
    teacher inservice training based on research that was done by
    this study that I talked about.
        Secretary Riley. And it was just a $2 million program.
        Senator Cochran. That is right. It is small, $3.8 million,
    but it is modest.
        Thank you, Mr. Chairman.
        Senator Specter. Thank you very much, Senator Cochran.
        We have been joined by our distinguished ranking member. We
    will call on Senator Harkin for an opening statement and a 5-
    minute round of questioning.

                      prepared statement of senator harkin

        Senator Harkin. Mr. Chairman, thank you very much. I
    apologize for being a little late, and I will not take the time
    to read my statement. I will just ask it be made a part of the
    record.
        Senator Specter. Without objection.
        [The statement follows:]

                      Prepared Statement of Senator Harkin

        Mr. Chairman, first I would like to thank you for holding
    this important hearing. There is no issue that is of greater
    significance to our Nation's future than the one we are here to
    discuss today--education, especially the education and
    development of young children. We have a tremendous list of
    witnesses and I extend a warm welcome to Secretary Riley,
    Governors Miller and Voinovich, Rob Reiner, and Dr. Bruce
    Perry.
        Over the years, this subcommittee has provided significant
    investments in research at the National Institutes of Health.
    During this hearing we will learn more about brain research and
    its implications for the education and development of young
    children. We have been reading a great deal lately about this
    research and it seems like we are learning more every day.
        The research provides the scientific evidence which
    validates what many parents and children's advocates have been
    saying for years--the greatest potential for learning happens
    during the first years of a child's life. Therefore, we need to
    make sure that all children have enriching learning experiences
    during that critical time.
        The first National Education Goal states that by the year
    2000, all children will start school ready to learn. I strongly
    support all of the goals, but believe that the first goal is
    essential for achieving the rest. Without a strong foundation
    in the early years, children, particularly children from low-
    income families, start school behind their peers and often find
    it very difficult to catch up.
        Several years ago I read a report by the Committee on
    Economic Development. This is a group of CEO's from some of the
    Nation's largest companies and they called on us to
    fundamentally change how we think about education. They said
    education is a process that begins at birth and that
    preparation must begin before birth. I believe this statement
    should be the cornerstone of how we think about education in
    America.
        Early intervention also makes good economic sense. A dollar
    invested in quality preschool programs such as Head Start saves
    as much as $7 in future costs by increasing the likelihood that
    children will be literate and employed rather than dependent on
    welfare or engaged in criminal activities.
        This subcommittee provides funding for a number of very
    important initiatives devoted to improving the education and
    development of young children. Chairman Specter, over the years
    we have worked together on a bipartisan basis to support these
    activities and I look forward to our continued partnership in
    the future.
        I know that we will face serious limitations on the amount
    of funding for programs under the jurisdiction of our
    subcommittee. However, I hope that we can agree to provide
    increased funding for Head Start for children from birth
    through age 3; provide increased funding for the Part H early
    intervention program for infants and toddlers with disabilities
    and to make sure that what we learn from research is reflected
    in our spending priorities.
        The President's 1998 budget provides significant increases
    in funding for college aid programs. This funding is vitally
    important for students and their families who are struggling to
    meet college costs. I fully support these initiatives.
        However, we must not lose sight of the importance of
    investments in the education of young children. After all, high
    quality educational activities during a child's first years
    often alleviates the need for more expensive interventions
    later on. I hope that we will be able to work together to
    create the infrastructure which truly redefines how we view
    education--as a process that begins at birth, with preparations
    beginning before birth.
        Thank you, Mr. Chairman.

                    importance of early childhood education

        Senator Harkin. I just want to again say that this hearing
    today is just vitally important not only just because of
    education, but because we are also focusing on early childhood
    education. All of the goals that we want to meet in this Nation
    in terms of education, whether it is college education,
    finishing high school, job training, it really goes back to the
    early childhood.
        We have had so many studies done in the last 20 years--I
    can stack them up on my desk and they would cover my entire
    desk--about the importance of investing in early childhood
    education. Every study that has ever been done shows that we
    get the most bang for the buck there.
        The Committee on Economic Development that was set up under
    former President Reagan that pulled together a number of our
    leading CEO's in the United States to study education spent I
    think probably 3 years or more looking at this. They set up a
    panel. They spent a great deal of time, and they wanted to look
    at it from the approach of a nonsocial scientist. They wanted
    to look at it from a hard business standpoint, what did we need
    in education in this country. So, they put together all these
    CEO's.
        Here is the report that came out. In 1990 I think it came
    out. But the commission was set up under President Reagan.
        You know what they said? This was all these hard-headed
    CEO's. What they said about education, they said, we have to
    understand that education begins at birth and the preparation
    for education begins before birth. They said in their report
    that if we really want to move this country forward, we have to
    put it down in early childhood education. Usually you hear that
    from social scientists, but this is from the business community
    of America.
        So, I am all for college loans and making sure that kids
    can get into college and everything, but if that is all we are
    going to focus on or focus most of our attention there, there
    are a lot of kids that are not ever going to get that far. So,
    we have to again go back to that early childhood education.
        I know that you in particular have been one of the greatest
    proponents of this, and I appreciate that very much. You have
    provided great leadership in this.
        I make that statement only because we cannot lose sight of
    that. We have to keep coming back to that initial early
    childhood education.

                 special education--early intervention programs

        Now, some of that of course is under a different
    Department. Part H of the early intervention program for
    infants and toddlers with disabilities is under the
    jurisdiction of the Department of Education. Part H has
    involved families. It has brought the parents in for early
    intervention programs. I believe it has been a great success.
    It has been very effective.
        I guess my first question is have you looked at it or would
    you have your people look at this, and what is it in Part H
    that has been so successful that we might be able to adapt or
    adopt in other programs, in early childhood education programs?
        Secretary Riley. Well, first of all, I agree with you that
    the infants and toddlers program, the 0 to 2 age range which we
    refer to as part H, has been very effective. The preschool
    incentive grants for 3- to 5-year-olds likewise has also been
    very effective.

         applying special education intervention techniques to reading

        So, I think when you work with a young child who is having
    difficulty learning and who has a disability, how you work with
    that child is multiplied by the same effects as how you would
    work with a child who had no difficulties. In other words, what
    works well for a child that is having learning difficulties
    would work extremely well for a child who is having no
    difficulties.
        I think of everything in the world that we can do, early
    childhood should be one of the strong emphases--and I discussed
    early childhood some, Senator, before you arrived. But, I say
    our emphasis on reading and concern with the special education
    numbers are really in a lot of ways related, because of the
    connection between reading difficulties and learning
    disabilities, and so forth. I think that when you look at the
    impact that part H of IDEA and the preschool incentive program
    under IDEA is going to have on reading, on special education
    numbers on up the line, it is going to be very significant. I
    think you can take a lot of the things that we learned there
    and reduce the number of these young people who are special ed
    students in the second and third grade if we handle them early
    enough and prepare them for their learning.

                   federal role in early childhood education

        Senator Harkin. Mr. Secretary, my time is out. I just want
    to follow up on just one point.
        We in this country have devised a system of education
    whereby elementary and secondary education is basically State
    and local based, and I think it has been a good system and I
    want to keep that control in the local level.
        When it comes to postsecondary school, the Federal
    Government has stepped in, going clear back to the old land
    grant colleges in the last century, the Pell grants, guaranteed
    student loan program. So, the Federal Government has stepped in
    very heavily in postsecondary education.
        But in elementary and secondary education, the Federal
    Government shares I think now less than 6 percent of the total
    amounts of money.
        But it also seems the Federal Government has stepped in on
    a national basis before in elementary education with things
    like part H, and with Head Start programs, of course, again
    which are not under your jurisdiction.
        I guess philosophically I am saying that perhaps we ought
    to envision a stronger role for the Federal Government
    nationally not so much in elementary and secondary education
    which is primarily--and has been for a long time--a function of
    States and local government, but using the same philosophy that
    we use on a national basis for postsecondary education. Using
    that to reach down to early childhood education with perhaps
    even new systems, providing education in day care, expanding
    part H, expanding the Head Start Program, so that the national
    goal of every child being ready and able to learn by the time
    they enter first grade is met by the year 2000.
        I just throw that out for your consideration. Maybe we
    ought to think about that as a prominent role for the Federal
    Government.

              importance of family involvement in early education

        Secretary Riley. Well, I think that is a very interesting
    idea. Of course--in thinking about your previous question, one
    of the strong things that we pick up when we give special
    attention to especially disabled young people is family
    involvement. That is the most significant part of part H. It
    gets the family involved and that clearly is beneficial to
    everybody. It's what works.
        I will think about that. The role of the family has to be
    such a critical part of these preschool years.
        Senator Harkin. Absolutely.
        Secretary Riley. So long as everything that was done puts
    the family at the head of the attention that the child will be
    given, I think your suggestion is very, very interesting.
        As you know, the State constitutions require the State to
    provide free public education for all children in the State,
    and that is perceived to be K through 12. Your question is very
    interesting: How about before K? Certainly after 12 it is very
    clear that it cuts off.
        I will ponder that, but I would say this, that you have to
    be very careful about making sure the family is first,
    especially for those very young children.
        Senator Harkin. Absolutely. I agree with you
    wholeheartedly.
        My staff just gave me the figure here. For Federal funding
    for child care and early childhood education 2 years ago--I
    guess that is the latest data we have--it was $4.8 billion.
    Total State funding for the same programs was $2.4 billion. So,
    we have already moved ahead in that area from the Federal
    standpoint.
        Senator Specter. Thank you very much, Senator Harkin.
        The Senator from Idaho, Mr. Craig.

                   prepared statement of senator larry craig

        Senator Craig. Mr. Chairman, thank you very much. Let me
    ask unanimous consent also that my opening statement be made a
    part of the record.
        Senator Specter. Without objection, it will be made a part
    of the record.
        [The statement follows:]

                  Prepared Statement of Senator Larry E. Craig

        Thank you Mr. Chairman. I would first like to thank the
    Chair, Senator Specter, and the ranking member, Senator Harkin,
    for holding this hearing and giving the subcommittee the
    opportunity to hear from the administration and others on both
    the education budget for 1998 and early childhood education.
        I applaud the President for making education a top priority
    during his second term. As a member of the Republican
    leadership in the Senate, I have worked with my colleagues to
    insure wide bipartisan support, where possible, for a number of
    issues relative to education and am pleased with the progress
    we have made.
        I believe all would agree with his goal of making our
    schools the best in the world and providing every American
    student the skills necessary to compete in the global economy
    of the next century. Indeed, the President's budget contains
    many items which rise above partisan debate and which I intend
    to fully support. For example, the administration's plan to
    expand Head Start is long over due. Similarly, I believe we
    have made progress on Pell Grants, special education, and many
    other items of concern.
        However, I was disappointed to see that for all the
    rhetoric on reform and bipartisanship, there are still too many
    areas where the President's proposal falls short.
        Chief among these is impact aid. Signed into law by
    President Truman in 1950, impact aid underlines the Federal
    Government's commitment to assist local school districts for
    lost revenue in cases where Federal ownership or Federal
    activity adversely interferes with a traditional revenue
    sources.
        After making great progress last year, the President's
    request for impact aid includes a $31.5 million reduction. No
    funds are provided for ``b students'' which make up a
    significant portion of the student population in impacted
    areas. Simply put, the President's budget fails to live up to
    our commitment in this area.
        Another issue of great concern to me is bilingual
    education. The administration has requested an additional $3.3
    million over last year for instructional services and $14
    million for support services even though it was made very clear
    last year that Congress does not support these programs.
        Likewise, for all the talk of promoting technology and
    helping rural schools, the administration has requested a $4
    million reduction in funding for Star Schools. This important
    program provides distance learning tools such as two way video
    and audio communications. The rural schools in my state rely
    heavily on this program and would be severely disadvantaged if
    the President's budget was adopted.
        Again, thank you, Mr. Chairman, for this opportunity to
    hear from the administration. I have several questions to be
    submitted for the record and look forward to the testimony here
    today. While I believe there is much we can agree on, there
    remain several areas where I believe the President has missed
    the mark. However, I do believe that what we have here is an
    opportunity to do great things for America's school children
    while remaining within a balanced budget.

             federal funding of higher versus elementary education

        Senator Craig. Mr. Secretary, thank you so much for being
    with us today.
        Let me say at the outset I think all of us were pleased
    with the President's new initiatives announced in the area of
    education and the priority that this administration has given
    it. We recognize that that would cause the Congress to move,
    and for those of us who value and see this as an important part
    of our responsibilities, we were pleased. Now, that is the end
    of the good side of the story.
        Now, Mr. Secretary, I will cut to the chase: in two areas
    that you led in last year you are not leading in this year. I
    am frustrated because, while Senator Harkin is absolutely
    right--most of our Federal dollars are in higher education and
    less than 6 percent in primary and secondary--there are some
    areas where the Federal Government has helped, is helping.

                       proposed cut in impact aid funding

        But in one instance, impact aid, your budget represents a
    slash of about $31 million over last year's totals. Those are
    real dollars on the ground, in the classroom, in areas where a
    large Federal presence is real. Of course, you know the issue
    and you know it well.
        The President's budget provides no funding for B students.
    I am from a Western State; 63 percent of my land mass is
    caretakered from Washington, DC. It is Federal property. I have
    native American reservations as well as military installations,
    and yet while the President takes great credit for an
    educational program, when we begin to look at it, the dollars
    flow where the dollars have always traditionally flowed: into
    the higher education levels as a percentage of the total.
        And you have cut back in the area of impact aid. That is
    one.

                      proposed cut in star schools program

        The other that is such a remarkable tool for the true rural
    school is the Star Schools Program. We all go around here
    talking about advancing technology and the application of
    education. I drove 55 miles through the forest on a gravel road
    about 1 year ago to a small community and I walked into the
    doors of the school and every child was sitting at a computer
    with a satellite up-link on a Star Schools Program, and they
    were getting a quality of education comparable to or greater
    than children in the wealthiest of suburban America. Why, even
    though they were in one of the ruralest of school districts in
    the State of Idaho? Because of the Star Schools Program.
        Your budget represents a cut in star schools funding this
    year.
        My two questions are: Why impact aid and why star schools
    funding, if in fact this President wants to participate in
    primary and secondary education at a level where our Government
    has historically had very real impact?
        Secretary Riley. Thank you, Senator, and I appreciate your
    positive comments in the beginning.
        Senator Craig. I meant them. [Laughter.]
        Secretary Riley. And I understand your inquiry. I think it
    is very legitimate.
        The star schools budget was a reduction from $30 million
    down to $26 million.
        Senator Craig. A $4 million reduction. That is right.

                    educational technology program increases

        Secretary Riley. But compare that, if you would, with the
    significant increase in technology that would be provided to
    the States, a total of $500 million in addition to this. In
    other words, the budget includes the technology innovation
    challenge grants, which the President proposes to increase to
    $75 million, that are leveraged out many times that, and they
    are wonderful, wonderful programs that get whole communities
    into technology. Then the technology literacy challenge fund
    would provide $425 million to the States based on their share
    of title I dollars. This would mean technology funds would be
    available for every school to be used for the same kinds of
    things. Distance learning, that the Star Schools Program has
    proven effective, could certainly be part of it.
        Senator Craig. Was your reduction in anticipation of a
    transition then to these new programs?
        Secretary Riley. Well, it is anticipation of the
    combination of those, and we really wanted to have a major
    boost in technology funds for the schools. Talking about what
    the Federal Government does, in terms of technology in the
    schools, the Federal Government provides some 25 percent of
    that. In other words, it is kind of an accepted thing that the
    Federal Government is going to help in that area at more than
    its average share for elementary and secondary education
    generally, which is, as was pointed out, 6 or 7 percent.
        So, I think the commitment to technology is very great, and
    the star schools budget was kept almost level, even considering
    the tremendous increase in the other technology challenge
    areas.
        Senator Craig. Well, for rural States, Idaho being one. We
    are going to be hearing from Governor Miller from Nevada. He
    has got schools that are probably even more rural than some of
    ours in Idaho, and I am sure they implement and utilize star
    schools funding, which is just an excellent tool.
        Secretary Riley. Well, and he does, and he also has
    probably the greatest growth, for example, in Las Vegas of any
    city in America, a combination of problems.
        I want you to understand we are not diminishing star
    schools. We think it has been a grand program. But we felt more
    or less level funding it, with a slight reduction, combined
    with a significant increase in the technology programs would be
    a good move for the country.

                                   impact aid

        Now, impact aid. I strongly understand the value and need
    for impact aid in areas where it applies, but we have, for a
    number of years, attempted to target those funds more to A
    students and less to B students. Again, that was not a large
    reduction--$615 million down to $584 million.
        Senator Craig. As you know, though, Mr. Secretary,
    certainly with your background in education, in schools that
    are almost wholly dependent on some of this kind of funding,
    those that have no ability to raise their tax base revenue
    because it is a Federal base----
        Secretary Riley. Yes; and they depend on this.
        Senator Craig [continuing]. They depend on this. You have
    cut their budgets and they have little or no alternative but to
    apply to the State or to the Federal Government for additional
    dollars because it is the Federal impact that they experience.
        Secretary Riley. Well, it is a relatively small reduction
    and it is an attempt again to target funds. Of course, as we
    all are struggling with the balanced budget effort, it is part
    of that effort.
        Senator Craig. I hope we did not fall in the trap that not
    only this administration has used but others before you, that
    because it is important and because it is often tied to
    defense, well, Congress is going to supply the money anyway.
    So, this is your way of acting frugal but we know it is going
    to get put back in. I hope that was not the logic because we
    should be emphasizing the importance of these programs.
        Secretary Riley. The programs are important and they are
    important for education.
        Senator Craig. Thank you.
        Secretary Riley. And we did not in any way intend to demean
    the programs, but it was an attempt to target our funds.
        Senator Craig. Mr. Secretary, thank you much.
        Secretary Riley. Thank you, Senator.
        Senator Specter. Thank you very much, Senator Craig.
        The Senator from Arkansas, Mr. Bumpers.

                       opening remarks of senator bumpers

        Senator Bumpers. Thank you, Mr. Chairman, and welcome to
    the committee, Mr. Secretary.
        Secretary Riley. Thank you, sir.
        Senator Bumpers. It is always a pleasure to have you here.

                            america reads challenge

        Mr. Secretary, first, let me ask you a question regarding
    the America reads proposal, which is designed to improve the
    reading skills of K through third grade children with 1
    million-person voluntary army of tutors. This is a very
    laudable thing for a lot of reasons. No. 1, presumably it will
    help the reading skills of the children, and No. 2, it will
    give 1 million people a sense of participation.
        But as you may or may not know, for years I have promoted a
    teacher training program through the National Endowment for the
    Humanities--I think you are familiar with it. The Carnegie
    Foundation started this many years ago by educating teachers
    during the summer months, paying them a stipend to attend--not
    just to be trained in a particular discipline that they
    taught--but trained in a whole host of things, for example, the
    value of the Constitution, the sacredness of the Constitution,
    and so on.
        As I looked at this America reads proposal I still have
    this strong hankering to do a much better job of educating the
    present cadre of teachers in this country. After all, education
    is not going to get better as long as the same people are doing
    the teaching unless they improve their skills. Would you
    comment on that?

                        teacher professional development

        Secretary Riley. Well, that is absolutely right. Education
    will only be as strong as its teaching force. As you know,
    Senator, we are having this week a teachers forum here and we
    are having the 50 Teachers of the Year from the 50 States that
    were chosen by the States, and we are having around 50 of the
    deans and presidents of the teacher colleges in here for them
    to have a dialog for 2 days and for us to really glean as much
    as we can out of these best teachers talking to the leaders in
    teacher preparation.
        Now, of course, the Eisenhower program, which we do
    recommend an increase in, is the program that goes to exactly
    what you are saying, and that is for the professional
    development of teachers who are teaching now.
        The President also has proposed to increase the funds for
    national teacher certification, a very difficult, rigorous
    effort to have master teachers, and this is to help poorer
    teachers and others get into that opportunity. We would like to
    see 100,000 of those, 1 perhaps in every single school--a
    master teacher in every school.
        But I thoroughly agree with you, that we should do
    everything we can to help teachers--and that is what teachers
    want.
        Senator Bumpers. They do indeed. Every time they offer one
    of these programs, it is oversubscribed immediately.
        Secretary Riley. Absolutely. Absolutely, and people really
    ought to know that. Teachers really want the opportunity to
    improve themselves, to work together, to develop lesson plans
    together. So, I thoroughly agree with you and I am in support
    of that concept 100 percent.

                            education tax proposals

        Senator Bumpers. Mr. Secretary, I guess this is more a
    statement than a question, and as you know, it causes me great
    pain to disagree with the President because I know he is a
    thoughtful person, and he is especially thoughtful in
    educational matters.
        But I am going to have a very difficult time voting for the
    tax proposals that he has suggested because those tax proposals
    are designed to help people, in my opinion, whose children are
    going to go to college anyway. It is not a refundable tax
    credit, and that means only the people who pay taxes will
    benefit. And I am interested in the people who have fairly
    good-sized families and do not pay taxes who are going to get
    no benefit out of this. When I look at the cost of the two tax
    proposals, the two educational tax proposals, the cost is $36
    billion over 5 years.

                              pell grant proposals

        Now, that is a big hunk of change. I know you also plan on
    increasing the Pell grant which actually does help poor
    students. We are increasing the Pell maximum award from $2,700
    to $3,000; that's a $300 increase in the Pell grant awards
    which will cost about $1.7 billion in 1 year, and then the cost
    of expanding the eligibility, that is, allowing people to have
    slightly bigger incomes and still be eligible for Pell grants,
    is going to cost $3.9 billion over 5 years.
        I do not mind telling you, Mr. Secretary, I would 10 times
    rather forgo the tax cut and put that money in Pell grants
    where I know--student loans or Pell grants or both, but Pell
    Grants especially--it is going to go to the people we are
    trying to help.
        Secretary Riley. Senator, the $1.7 billion increase for
    Pell over 1997 to 1998 includes the eligibility expansion too.
        Senator Bumpers. Is that both eligibility and increased
    award?
        Secretary Riley. Yes; so, it is a total of $1.7 billion
    which is a substantial increase in Pell, as you observed.
        Senator Bumpers. Based on history, it is.
        Secretary Riley. Yes; it is the highest increase I think
    over the last 20 years.
        I ask you please to stand back from the situation, and I
    realize what you are saying about middle-income people. The
    refundability really does not become much of an issue because
    if you are not making any income, generally you would qualify
    for Pell. In other words, if you are not making income, then
    the refundability does not mean anything to you.
        So, when we expanded eligibility for the independent
    student, the 24-year-old or older student who does not have
    dependents, then you cover 90 plus percent of those who would
    get refundability and cover them under Pell, which is
    tremendously more helpful.
        So, that whole student aid package is a very strong, well
    thought out package, and we think that really covers an awful
    lot for the poorer, the very poor students.

                            education tax proposals

        When you come to $30,000 for a family or $40,000 or $50,000
    and you have one or two or three children in school, you are
    what I call educationally poor if you are trying to send your
    children to college. We think this enormous number of people
    who are in this category, this middle-income category--and as
    you know, the President has pledged for tax cuts in middle-
    income people--to have tax cuts targeted for higher education
    in this category of people we think is a very solid proposal
    which will enable all young people to have a shot at college.
        Then the lifelong tax deduction up to $10,000 is a strong
    statement that education is important all of your life. The
    nontraditional student that is out of school can come back and
    get 2 years of training and then come back for another year and
    that $10,000 tax deduction would be applicable.
        So, I would urge you to take a look at that whole package.
    I think with Pell included and with the IRA and all of the
    other aspects of it, it is a wonderful package for higher
    education.
        Senator Bumpers. Thank you, Mr. Secretary.
        Senator Specter. Senator Bumpers, if you have one more
    question, proceed.
        Senator Bumpers. I just want to ask a quick question, if I
    may, Mr. Chairman.
        Senator Specter. I would like to make the questions as
    brief as possible, the answers too.
        Senator Bumpers. Yes.
        Senator Specter. We have many Senators here this afternoon.
        Senator Bumpers. Yes; I am sorry. I do not want to impose
    on my colleagues.

                          school-based health clinics

        But you know, I am married to the secretary of peace and
    childhood immunizations, and for many years she has told me
    that we ought to have school-based clinics in every school,
    particularly elementary school, in America. I did not pay much
    attention to that because it did not sound like a very
    plausible thing, even though when I was growing up poor in the
    South, the only shots we got were when the county health nurse
    came to the school.
        Now, you probably saw the story the other day that reported
    the number of school-based clinics in this country have gone
    from 500 to 1,000 in 2 years. That is all happening at the
    local level. The Federal Government has nothing to do with
    that. But I am beginning to think that Betty and Rosalyn who
    travel together, as you know, across this country on their
    Every Child by Two Program, are on to something, and obviously
    the local school districts of this country think they are on to
    something because when the exponential increase of school-based
    clinics occurs like this, it is obvious that a lot of school
    districts think this is very effective both from a health
    standpoint and from an educational standpoint.
        Are you familiar with what I just said?
        Secretary Riley. Yes, I am; and though that is not directly
    under my Department, of course, I am very aware of what happens
    out there in the schools. I would say in very poor areas
    especially, local people are making those decisions and that is
    a local decision, but it does seem to be working in many cases
    for them. I am seeing the same thing you are, especially in
    very, very poor areas.
        Senator Specter. Thank you very much, Senator Bumpers.
        The Senator from Nevada, Mr. Reid.

                            remarks of senator reid

        Senator Reid. Mr. Chairman, I will be very brief. I just
    want to say I hope that you have given the attention to the
    other 49 States that you have to Nevada. If you have, our
    country has been served well. You have been a great Secretary
    of Education for Nevada. You have come there and you have been
    concerned about rural Nevada in addition to our urban centers.
    So, I publicly extend my appreciation to you for your concern
    about the students of Nevada.
        Secretary Riley. I thank you and I thank you for your
    concern for the same students.
        Senator Specter. Thank you very much, Senator Reid.
        The Senator from Wisconsin, Mr. Kohl?
        Senator Kohl. Thank you very much, Mr. Chairman, and
    Secretary Riley, it is good to see you again.

            early childhood education for children aged 0 to 3 years

        I am pleased that Chairman Specter and Senator Harkin have
    called this hearing to look at the Education Department's
    budget with a particular focus on early childhood education.
    Recent research on the brain has confirmed what scientists have
    been talking about for years: The most significant period in a
    child's development is between the ages of 0 to 3.
        Mr. Reiner's efforts to publicize these findings has
    brought into our living rooms an issue that was previously only
    debated in laboratories; namely, what could we do to make sure
    that our youngest children are receiving the care and education
    that will shape the rest of their lives?
        Unfortunately, the Federal commitment to early childhood
    education has not caught up with our understanding of how
    important the first 3 years of life are. Early education and
    child care receives fewer resources, teacher training, salary,
    and even respect than the rest of the educational system.
        A new commitment to quality child care is necessary as a
    response to the fact that children between the ages of 0 and 3
    are spending more time in care away from their homes. An
    enormous percentage of women in the work force have children
    under the age of 3 requiring care. Many of these working
    families will not be able to find quality child care for their
    young children, and while Federal, State, and local governments
    have built an educational system for 5- to 25-year-olds in our
    country, care and education for 0- to 5-year-olds is largely
    unstructured, undervalued, and scarce.

               proposed child care tax credit for private sector

        Resolving this inequity will require solutions from the
    public and the private sector. I have recently introduced
    legislation to encourage the private sector to invest in
    quality child care for their employees through a new tax credit
    that would total up to $150,000 a year for construction and
    operation of quality child care centers for the children of
    these employees.

                   proposed innovative child care block grant

        Today I am announcing a new initiative to set aside funding
    under the upcoming budget to enhance innovative early childhood
    programs. This budget amendment would provide flexible funding
    in the form of block grants to allow States to focus on the
    educational needs of children in the 0 to 3 age group. This
    initiative will be mandatory spending paid for by cuts in other
    entitlement programs or minuscule reductions in the size of
    this year's proposed tax credit.
        I would like to hear from you, Secretary Riley, on your own
    reactions to this proposal as well as your interest and
    concerns about the 0- to 3- to 5-year-old child care problem in
    this country.
        Secretary Riley. Senator, suffice it to say, I think it is
    extremely important, and we did have some extensive discussion
    about it earlier and I will not go into repeating all of that.
    But it is absolutely critical, and the recent brain research
    information just makes it more and more important really by the
    day, as things are being developed.
        As I indicated to the committee, I was chair of the
    Carnegie task force dealing with children aged 0 to 3 that came
    out originally with the serious recommendations about the same
    thing you are talking about, these young children. The main
    crux of their findings was that if we have some shortcoming in
    this country, it is in the area of child care. So, I think your
    idea of prioritizing attention to child care makes great sense
    and certainly is consistent with the research.
        Senator Kohl. Thank you. Thank you very much.
        Senator Specter. Well, thank you very much, Senator Kohl.
        The Senator from Washington, Mrs. Murray.
        Senator Murray. Thank you very much, Mr. Chairman, and
    thank you, Mr. Secretary. Good to see you again.
        I commend Senator Kohl for his emphasis on early childhood
    education. As the only Senator in the history of this country
    who was a preschool teacher before being a Senator, I
    wholeheartedly recommend that we look at early childhood
    education and the impacts that it has.
        Secretary Riley, maybe you can comment further on the fact
    that we really focus on funding K-12 education, but we do not
    look at the public involvement in early childhood education,
    and perhaps we need to look at our commitment to funding early
    childhood education in the future.

               federal programs funding early childhood education

        Secretary Riley. Well, that fits of course into several
    other issues. Let me just mention a couple of things that we do
    do, and I am inclined to agree with you, Senator.
        But title I, for example, addresses early childhood
    education requirements for State and local plans, and those
    funds can be used for preschool.
        The parents as first teachers component under our reading
    proposal is very significant, modeled after the Parents as
    Teachers Program in Missouri and other places, as well as the
    HIPPY Program.
        The parent resource centers under Goals 2000, 28 of them in
    very poor areas of this country, also provide help. It is kind
    of parents helping parents.
        For Even Start, which is a very popular and very sound
    program, we recommend an increase to $108 million.
        IDEA, that we had a significant discussion about, includes
    part H and also the preschool incentive grants.
        Goals 2000. The first goal in Goals 2000 is that children
    enter school ready to learn, which looks back at the whole idea
    of preschool.
        So, when you add all of these together, it comes to about
    $1.5 billion. That is not any great amount of money, but it is
    more probably than people realize when you put all of these
    factors together. So, we do have some significant involvement
    on the part of the Federal Government, but I would certainly
    agree with you that it is a critical area that we should be
    looking at in the future.
        Senator Murray. A lot of what I hear back from my own peers
    is that we really need to really look at the quality of
    training and the quality of pay for early childhood education.
        Secretary Riley. Absolutely.
        Senator Murray. I know that it is a significant factor in
    the amount of people who go into the field, the staying power
    of those who stay in and the quality of what our kids learn
    that are in our preschool programs.
        As I listened to all the questions here, it really struck
    me that your job is very complex, Mr. Secretary. What we demand
    of our education system today is incredible. All of the
    diversity of the questions really points that out.

                             educational technology

        One of the coming challenges that we have that is upon us
    is the area of technology and the fact that today we have over
    180,000 jobs that are open in information technology, going
    unfilled, good paying jobs, and that we are looking to our
    schools to educate students in technology so that they have the
    skills to go into the jobs.

                        technology training for teachers

        One of the areas you and I have talked about before is the
    fact that we need to train teachers to teach who understand
    technology and how to use it, not just turning on a computer
    but integrating it with their curriculum. I have introduced a
    bill called the Teacher Technology Training Act that will
    require teachers to have technology training in order to get
    their certificate and also to have that as part of their
    professional development for all those teachers out there who
    have not had any technology training.
        Can you take a few minutes to tell us about what is in this
    budget in terms of technology and what you think we need to be
    doing and investing in most importantly?
        Secretary Riley. Well, when you talk about technology, I
    think the part that a lot of people do not pay near enough
    attention to is teacher preparation. You have all the computers
    and the Internet and everything in the world, and if you do not
    have teachers who understand how to use that technology, it is
    really not that valuable.
        So, we are recommending $500 million total--$425 million in
    the technology literacy challenge fund, which would go down to
    the 50 States based on their share of title I dollars, and $75
    million that would be technology innovation challenge grants.
        It has tremendous leverage. The funds that go down to the
    States in the fund, that is a large request and it is
    significant, $425 million. When a State develops its plan for
    using this money, teacher preparation should be a large part of
    that plan. The money does not have to go just to buy computers
    or buy wiring, connections, or whatever. They can use that for
    teacher preparation, for any of the other aspects of technology
    to make it work well for children.
        Star schools again is a little less than level funding, but
    we are maintaining that.

                                   eisenhower

        The Eisenhower Teacher Development Program, of course, can
    be used for teacher preparation and development in technology.
        Goals 2000, under the State plan can, of course, be used
    for that also.
        So, we have designed these funds to be flexible so that the
    States and the local schools are not hamstrung in their use and
    they can really use these funds as they see fit. Title I also
    can significantly be used to help with this area of technology.
        Senator Murray. Thank you.
        Are we going to have a second round?
        Senator Specter. No.
        Senator Murray. OK.
        Senator Specter. Would you like to ask another question?

                        training of america reads tutors

        Senator Murray. I just wanted to make a quick comment on
    the America Reads Program and I will make it real short, and
    that is that I hope that as you look at the America Reads
    Program, which I think is really a good way to go, that we make
    sure that we put in training for those tutors and training
    money. We cannot just send people out and say, teach kids to
    read. We need to teach them how to teach.
        Secretary Riley. Thank you very much. We have in there, in
    answer to that, Senator, the funds for 25,000 reading
    specialists, and their primary purpose is to train the reading
    tutors and make sure that they know what they are doing, what
    to look for, eye problems or whatever. Thank you very much.
        Senator Murray. Thank you. Thank you, Mr. Chairman.
        Senator Specter. Senator Murray, I would like to have
    another round, but we just do not have time. We have another
    panel and not unexpectedly, we have had a very large turnout of
    Senators because of the very important subject.
        Now, I would like to turn to the distinguished Senator from
    West Virginia, Mr. Byrd. We welcome you here especially,
    Senator Byrd, as an ex officio member, and I had some comment
    as to why I had skipped over you. I did not say at the time
    that it was at your request to go last.

                            remarks of senator byrd

        Senator Byrd. The chairman certainly gave me, at least, two
    opportunities to ask questions. I thank him for the work that
    he is doing as chairman of this subcommittee. He spends a lot
    of time and he is a very able chairman, and as the ranking
    member of the full committee, I feel that we are all in his
    debt.
        And I say also good things with respect to Mr. Harkin.
        Well, Mr. Secretary, I have been in Congress now 45 years.
    I have been a great supporter of funding for education. During
    the years I was chairman of the Appropriations Committee, I
    supported funding for education, and I am still a supporter of
    funding for education.
        But as one who started out in a two-room schoolhouse where
    we did not have high-technology, but we had dedicated teachers
    who knew how to teach and who knew how to exact discipline in
    the schoolroom and where we had students who wanted to learn,
    and when we had parents who wanted to back up the teachers and
    be supportive of the teachers, and whose foster father did not
    say, now, if you get a whipping in school, I will go up and
    whip your principal, but he said, if you get a whipping in
    school, I will whip you again when you get home. Now, that is
    the kind of school era in which I grew up.
        But, as I say, as one who has come out of that long-ago
    environment, as one who like James A. Garfield believed that if
    he had his old teacher, Mark Hopkins, on one end of the log and
    he himself on the other, there was a university.

                   progress of education in the united states

        Having said all that, to say that I voted for all the
    funding that Republican and Democratic Presidents have
    requested for education, yet with all of this high-technology
    and all of the reports that the various groups are able to turn
    out from year to year and make available to committees on
    appropriations and to the teachers and to the administrations
    and the schools of the country, with the significant Federal
    financial investment that we make in the Nation's education
    system--and I understood you to say that you were asking for
    $2.9 billion more than last year--why is the United States not
    turning out better students?
        Secretary Riley. Senator, you and I could talk for several
    hours on that question, but it is a very profound question.
        I would say this. First of all, when you look at the $2.9
    billion, a good portion of that is Pell, $1.7 billion, and you
    were here when we were talking about that earlier. So, the
    significant increase in Pell is a good part of that.
        The country is doing a much better job in education. I am
    absolutely convinced of that. If you look back when I finished
    high school in the 1950's, the dropout rate was around 40
    percent. Kids who were not so-called college material, dropped
    out and went to work in the mill or on the farm or whatever,
    and that was all right during that period because those jobs
    were there and that is all they called for.
        Today the dropout rate is still too high, but it is down to
    about 11 percent, and we have got to get it on down from that.
    Today a young person coming out as a dropout--as you well know,
    there are just very few jobs out there for them. They really do
    not have much of a chance to reach their so-called American
    dream.
        The complications--the exponential increase in knowledge
    that has exploded every year since the 1950's--really makes
    education so much different now than what it was. The
    requirements are different. The competition is different. The
    whole nature of education is different.

                 comparative standing in international testing

        In terms of testing and international testing in reading,
    we are now second in the world to Finland even though we have
    not increased our own testing levels significantly over the
    past 20 years, but we have a different cohort of students being
    tested. We've got more students in high school now than we did.
        In terms of math and science, we do not do as well. We are
    slightly above average in science, slightly below average in
    math. We then are trying to center in on math and science,
    centering in on reading, those basics, to master the basics.
    Just as you would have us do, is what I am trying to do. The
    President is also.

                   raising standards and academic excellence

        Raising standards is, Senator, exactly what you and I have
    talked about for several years now--raising the notch of what
    young people learn in school and what they are able to do when
    they come out of school. That is what the standards movement is
    all about. That is hard work. That is parent involvement. It
    might not be getting the spanking that you talked about, but it
    is very much the same kind of tone.
        So, I think we are coming along well in a complex time. We
    need to do more and we need to do it faster, but, I think we
    are doing that.
        Senator Byrd. Well, I thank you, Mr. Secretary, but you
    yourself said earlier that we are below the international
    average in math and many other subjects. I do not think we are
    doing so well.
        And I am getting just a little bit tired of voting for
    funding for the public schools of America when we cannot
    exercise discipline in those schools, and if there is not
    discipline, the students cannot study, those who are there to
    study and who want to study, and the teachers cannot teach. So,
    I am becoming a little bit discouraged.
        I hope that we will put greater emphasis on getting a true
    education, and I hope that we will learn to reward academic
    excellence.
        Now, I enjoy watching sports on television and I find
    myself getting on the edge of my seat just like other people do
    when they want to waste time watching football games and
    basketball games. And when you have watched one, you have
    watched them all. I came to that conclusion quite a long time
    ago. I do not say that in derogation of sports, but I think we
    have got our values turned on their heads in this country. We
    reward the athletes, and I do not begrudge the recognition they
    get, but I think we ought to reward good spellers and children
    who can read and write and add and subtract and divide and
    multiply.
        I think we ought to get back to the basics, as you say, but
    also get back to the basics in teaching. When I was in school,
    we had a spelling match every Friday afternoon. I looked
    forward to that. We had adding matches and other arithmetical
    matches. We are not putting the emphasis on excellence in
    education, academic excellence.

                            byrd honor scholarships

        And that brings me to my question. Some years ago, when I
    was earlier in the Senate, 1969, I started a program called the
    Robert C. Byrd Scholastic Recognition Award in which I gave to
    every valedictorian in every parochial and public high school
    in West Virginia a savings bond. I paid for it out of my own
    pocket. And it went on like that for some years, and then I
    established a trust fund so that I no longer have to pay that
    out of my pocket. But each valedictorian in each West Virginia
    high school, parochial and public, gets a Robert C. Byrd
    Scholastic Recognition Award, a handsome certificate, and a
    savings bond.
        I know in one case there were seven schools in one county
    in which students achieved a 4-point average, so I gave each of
    those seven students a bond.
        Now, in the 1980's I started a program in the Congress in
    which I sought to award merit, to award academic excellence. I
    did not care whether they were a doctor's son or a coal miner's
    son or daughter. I wanted to reward excellence and let that
    valedictorian, that student who strove to get ahead who worked
    hard in the laboratories and in the libraries and in the
    schoolrooms, I wanted him or her to get recognition because
    they were striving to achieve excellence. That is what enabled
    America to put a man on the moon first because of excellence in
    academics.
        So, Ted Stevens and some others here sought to name that
    program 2 or 3 years after I had gotten it started, and it
    provided a $1,500 scholarship to 10 students in every
    congressional district in this country chosen by the school
    administrators, teaching profession, and so on, in all of the
    States. So, Ted Stevens and others named that through a
    resolution the Robert C. Byrd Honor Scholarship Program.
        Two questions. Over the life of the program, how many
    students have received Byrd scholarships and how many new and
    continuing awards have been made?
        Mr. Skelly. Approximately 60,000 students, Senator Byrd. In
    1998, we will have 26,000 students getting awards.
        Senator Byrd. Thank you.
        In 1996 how much did the Department of Education support in
    need-based student financial assistance?
        Mr. Skelly. About $28 billion in need-based aid for college
    students was supported, and it cost approximately $10 billion.
        Senator Byrd. And how much did the agency spend for the
    same year for merit-based student financial assistance?
        Mr. Skelly. Our only merit-based program, Senator Byrd, is
    the Byrd Scholarship Program and we used $29 million.

                    merit aid--rewarding academic excellence

        Senator Byrd. Well, I thank you, Mr. Secretary, for
    supporting the Byrd Scholarship Program. I thank the
    administration. I think for the first year the administration
    has put into its budget the full amount of funding for the Byrd
    Scholarship Program, which is based on merit, which seeks to
    reward academic excellence so that students will feel that they
    are getting recognition. And whether, as I say, they come from
    the home of a lawyer, coal miner, doctor, minister, or
    whatever, if they can show that they have got the right stuff,
    they are going to get some recognition. I hope you will
    continue to support that program.
        Secretary Riley. Thank you, Senator. I wish you could make
    that same statement to every parent in America. I think that is
    grand.
        The whole idea, though, of the standards movement, Mr.
    Chairman, that you have supported and all of us have supported
    is very much in keeping with that. It is not intended to be
    soft. It is not intended to be easy, but it is raising
    standards in very many ways and I think it is the right way to
    go.
        Thank you, sir.
        Senator Bumpers. Mr. Chairman, I noticed when Senator Byrd
    was talking about professional athletes being overpaid, I could
    not help but notice Senator Kohl was nodding in agreement.
    [Laughter.]
        Senator Specter. When Senator Byrd was commenting about
    time spent on football, I thought of my father's comment,
    Senator Byrd. He was watching a football game one day and the
    ball eluded one player after another, as some of those fumbles
    do down the field, and he watched it for a while and he said,
    why do they not give those fellows another ball? [Laughter.]
        Senator Byrd. Mr. Chairman, one holiday season I decided I
    was going to watch all the football games, and I watched them
    through the Christmas season and New Year's Day. And I became
    so tense and so interested in the games that I just could not
    pull myself away. Of course, when I was in high school, I
    rooted for the home team also. I liked athletics.
        But after this period was over of several days, I turned to
    my wife and I said, what have I got to show for my time?
    [Laughter.]
        In every one of those football games, they did the same
    thing. I can describe a football game right now that will keep
    your attention and keep you on the edge of your chair.
        Senator Specter. After the second round, Senator Byrd.
    [Laughter.]
        Senator Byrd. But I decided that I ought to spend my time
    doing something else. And I say that not in derogation of
    athletics.
        Senator Specter. Senator Byrd, we welcome you here. We now
    know how to get full funding for a program. [Laughter.]
        Be in the Congress for 45 years and ask very pointed
    questions.
        We are privileged to have Senator Byrd here. For those who
    do not know, Senator Byrd spends a good bit of his time on
    soliloquies on the Senate floor and has published four volumes
    now, Senator Byrd, on the history of the Senate. And we are
    indeed fortunate to have him. When the red light is on and
    Senator Byrd goes overtime, we enjoy it. [Laughter.]
        Thank you very much, Senator Byrd.

                       prepared statement of senator bond

        The subcommittee has received a statement from Senator
    Christopher Bond which will be inserted into the record at this
    point.
        [The statement follows:]

               Prepared Statement of Senator Christopher S. Bond

        Mr. Chairman, it is always a pleasure to hear and learn
    from the U.S. Secretary of Education, Mr. Richard Riley.
        As I have traveled through Missouri and around the country,
    parents have told me, without exception, that they are
    concerned about their children's education, from kindergarten
    to the college level. If, like me, you see college tuition cost
    looming on the horizon--my son Sam will enter college in less
    than two years--you are wondering how in the world you are
    going to pay for it. And you are probably wondering why college
    tuition costs have gone up so much in the last few years. Since
    1980, average tuition costs at public universities have
    increased 234 percent, but the general rate of inflation and
    the average household income have increased only about 80
    percent (GAO Report). This is astounding and it seems to me
    that we need to be asking why.
        If you are a parent of an elementary, middle-school or
    high-school student, you may be concerned that they are not
    learning enough to compete in today's world or you may be
    concerned about their physical safety getting to and from
    school and even while in school.
        That is why I am a cosponsor of S. 1, the Safe and
    Affordable Schools Act of 1997. This legislation provides
    solutions to nearly all of these problems. I am pleased that
    the President's education budget contains several similar tax
    proposals included in S. 1.
        Mr. Chairman, as we all know, parents are the primary
    teachers of children and play a vital and enduring role in
    their education. I am pleased with the President's proposal for
    preschool children, particularly, the initiative to promote
    parental involvement in the early learning of their children. I
    am proud to say that in 1994 Congress passed Parents as
    Teachers legislation to expand the acclaimed Missouri program
    nationally, and has since provided funding for school districts
    to implement the program. This program, which I advocated as
    Governor and signed into law for all Missouri school districts,
    has a proven track record of increasing a child's intellectual
    and social skills that are essential when he or she enters
    school, and involving parents in creating a healthy and safe
    learning environment for their children. I hope that we will
    work to ensure increased funding for the Parent as Teachers
    program so that the program can be expanded into more
    communities.
        Mr. Chairman, I am delighted that Mr. Rob Reiner
    (television and movie director) will have the opportunity to
    testify before the Committee today. Mr. Reiner has launched the
    ``I am Your Child Campaign,'' and I am proud to be a part of
    this important new national effort to raise awareness about the
    first 3 years of life and how this critical period of
    development may shape a person's future success in school,
    work, families, and society as a whole. Mr. Reiner has produced
    a wonderful television special, ``I Am Your Child.'' I hope
    everyone will tune in on April 28 to this entertaining and
    informative show. Mr. Reiner, I appreciate your hard work to
    promote education in the earliest years of a child's life and
    to improve the care children get in those earliest years and
    look forward to continuing to work with you on programs that
    are an investment in our future.
        I am sure the White House Conference on Early Childhood
    Development and Learning: What New Research on the Brain Tells
    Us About Our Youngest Children will be successful. Fortunately,
    Missouri has known for years what research is now showing that
    the greatest capacity to learn is found in a child's early
    years. I am just glad to see that we are moving in the right
    direction and look forward to learning more about the new
    discoveries of brain development.
        I am also pleased that the Committee will have the
    opportunity to hear the testimony of our other distinguished
    panelists: Governor Bob Miller (D-NV) and Governor George
    Voinovich (R-OH) and Mr. Bruce Perry of Baylor School of
    Medicine.
        Mr. Chairman, I thank you for your consideration and look
    forward to a successful appropriations process which will
    enhance educational opportunities for all students and benefit
    parents and communities as well.

                         Additional committee questions

        Senator Specter. We now turn to our second panel. We thank
    you very much for coming, Mr. Secretary. There will be quite a
    few questions in writing because there are many subjects we
    could not cover. Thank you.
        [The following questions were not asked at the hearing, but
    were submitted to the Department for response subsequent to the
    hearing.]
                         Additional Committee Questions
                            private school vouchers
        Question. What have been the effects of private school voucher
    programs in Milwaukee, Cleveland, and possibly elsewhere in the Nation
    on the achievement of participating children?
        Answer. Three separate studies of the Milwaukee voucher program
    have drawn contradictory conclusions about the program's impact on
    student achievement. The evaluation by John Witte of the University of
    Wisconsin/Milwaukee found that virtually all participating parents
    expressed satisfaction with the program, but students' achievement did
    not improve significantly from their previous achievement in public
    schools. Greene and Peterson claim to have found evidence that the
    Milwaukee voucher program had a substantial positive effect on the math
    and reading scores of students who remained in the program for 3-4
    years; however, these results are not significant when adjusted for
    family background or prior achievement. A third study, conducted by
    Cecilia Rouse of Princeton, found that participating students made
    gains in math but not in reading. No data are available yet on the
    Cleveland voucher program; however, the Ohio Department of Education
    will be conducting an independent evaluation.
        Question. Might such programs be a partial solution to the serious
    problems faced by disadvantaged pupils in high poverty school
    districts?
        Answer. Based on a limited number of studies of school choice
    programs, there is no conclusive evidence that these programs have a
    positive impact on student achievement. In general, most differences
    between performance in public and private schools can be explained by
    the family background of the students--such as family income and
    parents' educational attainment. Some research indicates that public
    schools of choice show as large a benefit (if not larger) than private
    schools in producing better student achievement. For example, a recent
    analysis comparing 10th graders in Catholic schools, nonreligious
    private schools, and magnet schools found that magnet schools showed
    the strongest achievement benefit, with significantly higher
    achievement in reading, social studies, and science.
        In general, probably the most effective educational choice that
    parents and students can make is to choose to take more challenging
    courses. Gamoran found that after controlling for course-taking and
    other student factors, both Catholic and nonreligious private schools
    showed no significant advantage in any subject, while public magnet
    schools showed a significant advantage in reading, social studies, and
    science.
     use of private school facilities to relieve crowding of public schools
        Question. Some school systems are exploring using religiously-
    affiliated private schools as a means to relieve overcrowding in public
    schools. What legal and policy issues are raised by such efforts?
        Answer. Some school districts may consider using private schools as
    a quick and easy way to deal with overcrowding. However, it is not
    clear that there are sufficient spaces available in private schools to
    have a substantial impact on overcrowding. In addition, inclusion of
    religious schools in any plan to address overcrowding concerns would
    raise constitutional issues. The study that the Department is
    undertaking in response to a directive in the 1997 Conference Report
    will examine these important issues. We believe that a more effective
    approach to relieving overcrowding in public schools is not short-term
    use of available spaces in private schools but for States, localities,
    and even the private sector to meet the responsibility to provide
    adequate public school facilities.
                         school construction initiative
        Question. Does your school construction proposal address the
    overcrowding problems faced by these school districts?
        Answer. Yes, one of the objectives of our school construction
    legislation, the Partnership to Rebuild America's Schools Act, is to
    help school systems build the additional schools they need, or will
    need, to serve increasing enrollments. In addition, under the
    legislation, approximately one-half of the funding would flow to the
    100 districts that serve the largest numbers of children from low-
    income families. Districts in this group, such as New York and Houston,
    are the same ones that have been considering using private schools to
    relieve overcrowding.
      feasibility study on use of private school facilities to alleviate
                          public schools overcrowding
        Question. Last year, I included language in the conference report
    accompanying the omnibus appropriations bill requesting that your
    Department provide to the Committee by September 1, 1997 a feasibility
    study outlining the benefits of using private and parochial schools as
    an alternative to alleviating the overcrowding in public schools and
    barriers to using public school dollars for tuition reimbursements.
    What is the status of your work on that study?
        Answer. The study is somewhat behind schedule due to extended
    consultations with private school and public school organizations and
    with the Office of Management and Budget over the study design and
    questionnaires. OMB cleared the data collection instrument on May 2,
    and the Department sent out surveys the following week. This data
    collection consists of the following components:
      --A survey of urban school districts to determine the extent of
            overcrowding, and the status of efforts to alleviate
            overcrowding. This survey went to 24 large urban districts that
            have identified a problem with overcrowding.
      --A survey of private schools to determine their capacity to serve
            additional students and to obtain information about their
            tuition and fees, admissions policies, student diversity, and
            interest in participating in a program to help the public
            schools reduce overcrowding. This survey went to a
            representative sample of private schools located in the
            geographic areas covered by the above 24 school districts.
      --A survey of private school organizations to explore potential
            issues and concerns for private schools that might participate
            in such a program.
        Although we will make every effort to complete the study as quickly
    as possible, it seems unlikely that we will be able to deliver the
    final report to Congress by the requested date of September 1. If we
    cannot provide the complete report by that date, we will submit an
    interim report by September 1 that discusses the legal issues
    surrounding the use of public dollars for the education of students in
    private and religious schools, implementation and program design issues
    based on the experience with publicly funded voucher programs in
    Milwaukee and Cleveland, and issues raised by the private school
    organizations.
              funding for the voluntary national assessment tests
        Question. Would you provide the Committee with details on the
    proportion of fiscal year 1997 appropriations, and of the fiscal year
    1998 budget request, that you propose to use for the development and
    administration of ``national tests'' in reading and mathematics for
    fourth and eighth grade students?
        Answer. We will use funds made available for the Fund for the
    Improvement of Education (FIE) in the appropriation for Education
    Research, Statistics, and Improvement to develop these tests. We expect
    to use up to $10 million in FIE funds for this purpose in 1997, and up
    to $12 million in 1998, infinitesimal portions of the $29 billion
    fiscal year 1997 appropriation and the $39 billion fiscal year 1998
    request. Funds will not be needed for implementation (or
    administration) of these tests until 1999 when they first become
    available for use by States and districts.
        Question. Since there was no mention of using these funds for this
    purpose in your fiscal year 1997 budget, don't you feel that a formal
    reprogramming request is in order if these funds are to be used to
    develop these national tests?
        Answer. No. We think the FIE authority and funding is so broad that
    no reprogramming is necessary.
        Question. What is the Department's statutory authority for
    conducting your proposed national testing program?
        Answer. We believe that authority exists under the Fund for the
    Improvement of Education authorized by Title X, Section 10101 of the
    Elementary and Secondary Education Act (20 USC 8001).
      school construction initiative--proposed as mandatory appropriation
        Question. The Administration's initiative for school construction
    would provide a program of $5 billion over 4 years to pay Federal
    interest subsidies for construction projects for school districts
    repairing existing K-12 schools or building new schools to meet
    overcrowded conditions. Why is the funding for this proposal being
    requested as a ``mandatory'', rather than a ``discretionary''
    appropriation?
        Answer. In order for this program to have its intended impact on
    State and local activity, it is important that the States and
    communities know that the money will be available up front. Without a
    guarantee of funding--that is, if annual funding is subject to the
    regular appropriations process--States and communities may be unable to
    initiate bonds and other financing actions, which would undermine the
    purposes of the program. For this reason, the Administration has
    proposed making the School Construction program a mandatory
    expenditure.
                  financing the school construction initiative
        Question. For what length of time will Federal funding be required
    to meet commitments under the proposed school construction program?
        Answer. The Administration has proposed a one-time, $5 billion
    mandatory appropriation in fiscal year 1998. In order to give States
    and school districts sufficient time to develop their school
    construction plans and go forward with bonds and other financial
    activities, the funds would be available for obligation for four years.
        Question. How do you anticipate financing the school construction
    program?
        Answer. The Administration has proposed to finance the program
    through a one-time, $5 billion mandatory appropriation.
        Question. If you are using spectrum sales, what is to prevent other
    competing interests from using the same source of money? Also, how
    stable will the money source be?
        Answer. We are no longer proposing to finance the program through
    spectrum sales. When the President announced this initiative during the
    course of Congressional deliberations over the 1997 budget, he was
    required to identify an offset because the program had not been
    included in the Administration's budget submission. At that time (July
    of 1996), we identified the sale of a portion of the VHF television
    spectrum as the offset.
        Now, because the proposal fits within the President's overall plan
    for eliminating the budget deficit, as enunciated in the 1998 budget, a
    specific offset is not needed, and the proposal is no longer tied to
    spectrum sales.
             identifying districts with critical construction needs
        Question. What criteria will be used to determine which schools are
    ``in greatest need?''
        Answer. Under our proposal, States would give priority to
    construction projects in localities with the greatest needs, as
    demonstrated by inadequate educational facilities coupled with a low
    level of resources to meet school construction needs. The States would
    measure the needs of different communities through a survey undertaken
    with the involvement of school officials and experts in building
    construction and management. The 100 urban districts that would receive
    direct grants from ED would undertake a similar survey of their school
    construction needs and would use the Federal subsidy to fund their
    highest-priority needs.
        Question. Where do ``technology needs'' rank in the list of
    ``needs'' for schools in the President's school construction proposal?
        Answer. The Administration recognizes that improving school
    infrastructure to enable the use of advanced educational technologies
    is one of the major challenges facing school districts. Our bill would
    thus authorize States and districts to use the Federal funds to support
    construction that facilitates the use of educational technologies. It
    would not, however, make this type of construction a higher or lower
    priority than repairs to meet health and safety needs, disability
    access, improvement in energy efficiency, or other types of eligible
    construction activities. That decision would be up to local and State
    officials.
        It is likely that most construction projects will meet more than
    one need; a school renovation can, all at once, upgrade building
    systems (such as plumbing and heating), increase energy efficiency,
    remove architectural barriers to disability access, and provide the
    wiring needed for new computers and other technologies. It would be
    cumbersome, and thus inappropriate, for the Federal Government to
    specify one or more of these activities as priorities.
                          ebonics and federal programs
        Question. Mr. Secretary, on January 23, 1997, this Subcommittee
    convened a panel to discuss the issue of Ebonics. Unfortunately, your
    schedule did not permit you to attend that hearing. Are there any
    current Federal education programs that either might be used or are
    presently being used to support school programs based on Ebonics?
        Answer. Because we do not view Ebonics as a language, we do not
    believe that the objective of teaching or maintaining Ebonics as a
    language would come within the purposes of any of our programs.
        Question. Is it possible for schools to use their funds under Title
    I of the Elementary and Secondary Education Act for an Ebonics-based
    program?
        Answer. Schools have the flexibility to decide how to use Title I
    funds to help disadvantaged students meet high standards in core
    academic subjects. They can use the teaching tools and approaches that
    they believe make the most sense in helping raise their own students'
    performance. However, the bottom line is that Title I requires schools
    to show that their students are meeting high standards in core academic
    subjects.
             white house conference on early childhood development
        Question. What role is the Department playing in tomorrow's White
    House Conference on Early Childhood Development?
        Answer. Department staff participated in the interagency planning
    meetings for the conference, helped identify participants, developed
    lists of potential invitees to the conference, and provided early
    childhood research reports and other materials for use in planning the
    conference. In response to the White House Executive Order, the
    Department prepared a detailed report of its early childhood research
    and program activities.
        The Department's Office of Educational Research and Improvement
    (OERI) is assisting with the editing and production of the conference
    proceedings, in conjunction with the Department of Health and Human
    Services (HHS).
      relationship between a child's early experiences and school success
        Question. Do you have any information on the relationship between a
    child's experience during the first three years of life and later
    success in school?
        Answer. The National Institute on Early Childhood Development and
    Education, within OERI, is supporting a number of projects that are
    examining the relationship between children's early experiences and
    their success in school. Examples include:
      --(1) Research conducted by the National Center for Early Development
            and Learning on how quality in early childhood programs for
            young children affects school performance and behavior by
            second grade; how early childhood experiences at home and in
            preschool settings influence children's transitions to
            kindergarten; and how family-centered, community-based
            intervention models improve outcomes for young children with a
            variety of risk factors.
      --(2) A multi-site, randomized study of the short-and long-term
            effects of the Parents As Teachers (PAT) program, and whether
            it affects parent knowledge, attitudes, and behaviors; parent-
            child interactions; and early development and later school
            readiness, school performance, and attendance of young
            children. This study will assess the effectiveness of early
            parenting education and the support provided through home
            visiting for families with young children.
        In addition, OERI and HHS's Maternal and Child Health Bureau are
    currently funding a follow-up of the Abecedarian Study, one of the best
    research studies on the relationship between a child's earliest
    experiences and his or her later success in school. The study has found
    that ``educational intervention very early in the life span had greater
    impact than experiences provided later'' (Campbell & Ramey, 1995). The
    study has found that children who received an intensive preschool
    program continued to have higher intelligence test scores,
    significantly higher test scores in reading and math, fewer cases of
    retention in grade (39 percent vs 59 percent), and fewer special
    education placements (24 percent vs 48 percent) than children who did
    not receive the intervention. Currently, 74 of the original 111
    Abecedarian children are taking part in the follow-up investigation. To
    date, they have been evaluated at ages 8, 12, and 15. The follow-up
    will look at the role that fathers played in the children's learning
    and social development; community-level influences; and individual
    differences among the sample population.
        While there has been little research that begins with children
    during the first three years and assesses their later school success,
    the Carnegie Corporation's 1994 report, Starting Points, documents the
    importance of the first three years in how children and adults
    function. The brain develops rapidly and extensively prior to age one
    and is vulnerable to environmental influence, including nutrition,
    health care, and how parents and other caregivers treat the baby. The
    major implication is that experiences in the earliest years must be
    enhanced regardless of the settings children are in, including family
    and child care environments. A failure to invest resources in education
    and development until a child reaches kindergarten, or even 3 and 4
    years old, may be penny wise and pound foolish.
        Studies related to children with disabilities also provide
    important information. The Infant Health and Development Program, a
    national multi-site study completed in 1992, found that low-birth
    weight, premature infants who received comprehensive early intervention
    and preschool services scored significantly higher on tests of mental
    ability, and experienced lower mental disability rates, compared to
    children who received only health services. The Early Intervention
    Collaborative Study also found developmental gains after one year of
    intervention in children with identified disabilities or who were at
    risk for developmental disabilities (Shonkoff, et al., 1990). In 1996,
    the Early Intervention Research Institute completed work on a number of
    longitudinal studies of the effects and costs of early intervention
    with children with disabilities. These studies indicate that positive
    differences continued as children progressed through elementary school.
    recognizing the importance of early brain development in department of
                               education programs
        Question. How is the importance of brain development in the first
    three years of life recognized in education programs and activities?
        Answer. In the Special Education area, we know that the earlier you
    intervene, the more positive effect you can have on the cognitive
    development and functional abilities of infants and toddlers with
    disabilities. In recognition of the importance of the first three years
    on the physical and mental development of the child, we support a
    number of early intervention activities. For example, the Infants and
    Families program, for which $324 million, an increase of $8 million, is
    requested in fiscal year 1998, assists States to implement coordinated,
    comprehensive statewide interagency systems to make available early
    intervention services to all 0 to 3 aged children with disabilities and
    their families. To promote effective implementation of this program, we
    also conduct a comprehensive program of early childhood research and
    technical assistance on best practices related to early intervention
    for infants and toddlers with disabilities or at risk of developing
    disabilities. We also provide information to parents on early
    intervention and early childhood education through Department-funded
    clearinghouses and our parent training program.
                ongoing research activities on early development
        OERI's National Institute on Early Childhood Development and
    Education sponsors many activities that focus on how to use the results
    of brain research in programs or practices aimed at young children.
    Specifically:
      --(1) The National Center for Early Development and Learning at the
            University of North Carolina conducts research that examines
            the relationship between the quality of child care environments
            and children's learning and development. The work is focusing
            on intervention models currently used with infants who have
            ``failure-to-thrive syndrome'', young children who have early
            onset of aggressive and antisocial behaviors, and children
            whose families have low literacy levels. It aims to determine
            if new, family-centered, community-based models of supports and
            services reduce risk factors and improve outcomes for these
            young children and their families.
      --(2) A study of the Prevention of Reading Difficulties in Young
            Children is being conducted by the National Academy of
            Sciences, with funding from the Early Childhood Institute, the
            Department's Office of Special Education Programs, and the
            National Institute on Child Health and Human Development in
            HHS. The effectiveness of existing models of prevention,
            program intervention, and instructional techniques used with
            populations of children at-risk for reading difficulties will
            be compared. Major policy implications of the research will be
            highlighted, as will future directions for research and
            practice. Materials also will be prepared for practitioners and
            parents.
      --(3) A project to identify, describe, and disseminate information
            about promising school-based or school-linked programs that
            reduce the number of low birth weight babies (under 5\1/2\
            pounds) born to adolescent mothers. HHS reports that 22.5
            percent of babies born to teenage mothers in 1992 were low
            birth weight. We do not know how low birth weight is related
            specifically to brain development. However, the Packard
            Foundation's 1995 report on this topic found that, after
            controlling for other factors, low birth weight children are 50
            percent more likely to be placed in special education programs
            than normal birth weight children. In addition, 31 percent of
            low birth weight children repeat a grade compared to 26 percent
            of normal birth weight children.
        planned research activities related to brain research and early
                       childhood development and learning
        Additional activities are planned, including:
      --(1) A Study of Early Childhood Pedagogy by the National Academy of
            Sciences. This two-year activity will convene leading early
            childhood researchers and educators to determine what young
            children should know, when they should know it, and how they
            can learn best what they need to be prepared for and successful
            in school. How to translate neuroscience findings to everyday
            practice will be part of the discussions and deliberations.
      --(2) A National Forum on Neuroscience Research and Early Learning:
            Implications for Educational Practice and Public Policy
            sponsored by the Early Childhood Institute, the Danforth and
            Dana Foundations, the Parents As Teachers National Center, and
            the Graduate Department of Neuroscience Research at Washington
            University (St. Louis). The Forum, to be held in the fall of
            1997, will examine recent neuroscience research findings and
            their relationship to the development of language, literacy,
            and reading in young children. Discussions will focus on the
            implications these findings have for States and communities as
            they design early education and child care policies and
            programs for young children and their families.
      --(3) The National Center for Early Development and Learning will
            sponsor, in September 1997, a research synthesis conference to
            determine what infant-toddler child care practices and policies
            will maximize learning and development. For very young
            children, the average age of entry into child care is 3 months,
            and research shows that infant-toddler care is usually of the
            poorest quality. Invitees will include a mix of leading
            neuroscience and early childhood researchers and practitioners.
      --(4) The Early Childhood Institute will sponsor a conference on
            Developmentally Appropriate Practices and Early Brain
            Development that will include neuroscience, child development,
            and early childhood researchers, family organization
            representatives, and practitioners to discuss young children's
            learning and development. The purpose will be to develop a
            document that presents a summary of some key brain development
            findings related to young children; includes a section to help
            parents and educators understand these findings; and includes
            examples of developmentally appropriate activities that
            educators and parents can use in everyday activities with young
            children.
    interagency coordination to develop education policies recognizing the
                           importance of the ages 0-3
        Question. To what extent does the Department of Education
    coordinate with the Department of Health and Human Services and other
    Federal agencies to develop comprehensive education policy that
    recognizes the importance of ages 0-3?
        Answer. The National Education Goal of school readiness, with its
    emphasis on nutrition and health care, access to preschool, and
    parenting, provides a natural link for interagency coordination of
    early childhood education efforts, and we are working closely with
    other agencies to ensure that young children start school ready to
    learn. To help achieve this goal, we are collaborating with the
    Department of Health and Human Services and other Federal agencies to
    develop a coordinated approach for planning future directions for early
    childhood research, practice, and policy. For example, in the Special
    Education area, the Secretary heads a Federal Interagency Coordinating
    Council related to infants, toddlers, and children with disabilities,
    the purpose of which is to ensure effective coordination and minimize
    duplication of Federal early intervention and preschool programs and
    policies; coordinate technical assistance and support activities to
    States; identify gaps in Federal programs and services; and identify
    barriers to Federal interagency cooperation. The Council includes
    representatives from Federal, State, and other agencies, and parents.
    Representative HHS agencies include NIH, Maternal and Child Health, the
    Administration for Children and Families, the Administration on
    Developmental Disabilities, and the Health Care Financing
    Administration, and others.
        The Department's National Institute on Early Childhood Development
    and Education, in February 1995, convened the Early Childhood Research
    Working Group, which is comprised of agencies across nine Federal
    departments and the Government Accounting Office. The agencies have
    research, data collection, and service delivery responsibilities
    focusing on children from birth through 8 years of age and their
    families. The purposes of the Working Group are to share early
    childhood research, development, and policy information across Federal
    agencies; offer opportunities for professional development for
    agencies' staff; and develop a mechanism for building a collaborative
    research, development, and policy agenda for children from birth
    through 8 years of age and their families.
        We co-fund research and technical assistance activities to promote
    broad understanding of what children should know and be able to do at
    various developmental levels from birth through age 8. For example, the
    Early Childhood Institute supports collaborative research efforts with
    other Federal agencies, including an interagency study of the effect of
    comprehensive interventions on young children's learning and
    development, and a project on the prevention of reading difficulties in
    young children. The Institute will also join the National Institute of
    Justice and the MacArthur Foundation in a nine-year study, following
    7,200 children in Chicago, to learn how aggressive behaviors develop
    and what interventions, beginning in infancy, might reduce the
    behaviors. In addition, the Institute will join the National Institute
    on Child Health and Human Development's study of the Health and Mental
    Health Adjustment of Immigrant Children, which will have major
    implications for the public schools.
        We also carry out other collaborative efforts with HHS such as
    joint monitoring of the Infants and Families program.
                title i, even start and head start collaboration
        Our efforts also include building continuity between Head Start,
    Title I, and Even Start programs so that they more effectively address
    the developmental and educational needs of the children they serve. For
    example, beginning in 1998, Title I preschool programs must meet
    several requirements for developing early childhood curricula that also
    apply to Head Start programs. We worked closely with HHS to help
    schools and districts implement those standards. Also, the Even Start
    family literacy program reinforces early learning by integrating early
    childhood education for children from birth through age seven,
    parenting, and adult literacy activities that help parents take a more
    active role in their children's learning. By networking a variety of
    services for families, Even Start projects link families with Head
    Start and other early childhood programs, as well as family health and
    nutrition assistance, English language classes, day care, and job
    training.
          proposed postsecondary education tax credits and deductions
        Question. The Administration has proposed Federal tax credits and
    an alternative tax deduction for postsecondary education tuition and
    fees. What do you consider to be the advantages of this form of
    assistance compared to the more traditional form of authorization and
    annual appropriations for student assistance through grants and loans?
        Answer. The primary goal of our tax credit and deduction proposals
    is to reduce the tax burdens faced by middle-income families who are
    struggling to help pay the college bills of their children. Our tax
    credit and deduction proposals complement our proposals for
    substantially increased direct need-based grant aid to students,
    including the highest Pell Grant maximum award in history. These
    traditional programs tend to provide more help to poorer families than
    to the middle class.
        Question. Is there any way to control budgetary costs of such tax
    expenditures since these would not go through the annual appropriations
    process?
        Answer. The budgetary costs of these tax provisions would be
    controlled by eligibility limits on family income, costs of attendance,
    and other criteria. These are not open-ended policies. In addition, the
    provisions could be modified during a budget reconciliation process if
    necessary. The higher education tax proposals are consistent with the
    President's and the Congress's goal of reaching a balanced budget. The
    President's proposals for the HOPE Scholarship and the education tax
    deduction can be paid for fully within the fiscal year 1998 President's
    Budget.
              impact of tax proposals on access and college costs
        Question. Do you have any information that would suggest which form
    of assistance--tax credits or deductions versus grants or loans--would
    more likely increase access to postsecondary education and strengthen
    educational opportunities in general? What is the basis for claims that
    the proposed tax credits and deductions would increase access to
    postsecondary education?
        Answer. I do not think you should look at this situation as a
    choice between higher education tax proposals and traditional student
    aid. We need both. All these forms of assistance would improve access
    to postsecondary education. Need-based aid would be available to
    students from low-income families. The tax provisions would be
    available to students from middle-class families, as well as for
    workers returning to school to acquire additional skills. Finally,
    loans would be available to students who come from families which have
    a variety of income levels.
        Question. Do you have any information that would suggest which form
    of assistance would be more likely to curtail the constantly rising
    costs of tuition and fees for postsecondary education? Is there any
    evidence to suggest that state legislatures would not use the
    availability of tax credits and deductions as an opportunity to raise
    tuition at state colleges and universities by an equivalent amount?
        Answer. Federal assistance for postsecondary education has little
    to do with postsecondary tuition costs. Postsecondary cost increases
    are driven by such factors as the need for technological and academic
    facilities improvements, increasing faculty salaries, and institutional
    financial aid.
        I do not believe that state legislatures will raise tuition at
    state colleges and universities because of the proposed tax provisions.
    Many factors enter into a state legislature's decision to set tuition
    at a certain level. Those factors include the level of subsidy the
    state believes is equitable for all of its citizens as well as its
    willingness to tax and its ability to pay. Typically, states have a
    clear policy to maintain low tuition levels at its public institutions.
                        proposed america reads challenge
        Question. What is the rationale for the proposed ``America Reads
    Challenge'' program? We already have major programs for young children
    that focus largely on developing reading skills--Head Start, Title I,
    Even Start, and smaller efforts such as the Parental Assistance program
    authorized by Title IV of Goals 2000--so why do we need another program
    in this area?
        Answer. The proposed America Reads Challenge will be devoted
    exclusively to helping children read well and independently by the end
    of the third grade. Although Head Start, Title I, and the Goals 2000
    Parental Assistance program devote resources to helping develop
    children's reading skills, these programs have a much broader purpose.
    The whole idea behind the America Reads Challenge is to work with
    parents and educators to complement and support these other, essential
    programs so they can be even more effective in helping children
    increase their skills and achievement levels, and by extending the on-
    task learning time of children who need special help in reading,
    particularly before and after school and in the summer.
        Even when students receive the very best in-class instruction, some
    will always need extra time and assistance to meet the high levels of
    reading skills needed in today's economy. A significant part of the
    America Reads Challenge, Parents as First Teachers, will provide grants
    to organizations that assist parents, including those with children in
    Head Start, to help their children become successful readers. The
    Reading Corps portion of America Reads, which will provide tutoring to
    students after school, on weekends, and during the summer, will
    coordinate its tutoring efforts with each child's in-school reading
    program. One-on-one instruction is a key component in enhancing reading
    skills. Study after study finds that sustained individualized attention
    and tutoring after school and over the summer can raise reading levels
    when combined with parental involvement and quality school instruction.
        For our Nation to achieve its full potential, we must make sure
    that every young child can read. Far too many of our young people are
    struggling through school without having mastered this most essential
    and basic skill. On the 1994 National Assessment of Educational
    Progress, 40 percent of all 4th graders scored below the ``basic''
    reading level. This is just not good enough. By the start of 4th grade,
    students must be able to read so that they can learn science, history,
    literature, and mathematics. If they can read then, they can read to
    learn for a lifetime. Students who fail to read well by 4th grade have
    a greater likelihood of dropping out and a lifetime of diminished
    success.
      legislation designed in response to needs identified by school and
                        community literacy partnerships
        Question. Is the ``America Reads Challenge'' largely an effort to
    link AmeriCorps with much more popular, less controversial programs in
    an effort to secure its future? What are the truly new elements of the
    America Reads Challenge?
        Answer. We have designed the America Reads Challenge legislation in
    response to the needs of school and community literacy partnerships,
    not as a strategy for boosting AmeriCorps. Last fall, officials at the
    U.S. Department of Education met with individuals from parent groups,
    businesses, leading principals and teachers, literacy groups, and
    community organizations and asked them what they thought was needed to
    help America's children learn to read successfully. The general and
    overwhelming response focused on two things: 1) the need for trained
    reading specialists to train volunteer tutors; and 2) the need for
    organized tutor coordinators to help match tutors with children. What
    is unique about the America Reads Challenge legislation is that it
    builds on this feedback and will provide the resources necessary to
    implement and carry out successful school and community reading
    programs that extend learning time for children who need extra help to
    read well. These school and community partnerships are doing a good
    job, but they are reaching only a few of our children who need help.
        In the America Reads Challenge Act, the Corporation for National
    and Community Service would help local reading programs recruit and
    organize volunteer tutors. The tutors, coordinating with the in-school
    reading program, would provide individualized after-school, weekend,
    and summer reading tutoring for children who want and need the extra
    help. We expect these tutors to help link the reading program, teacher,
    school, child, and family. The funding for the Department of Education
    will provide the technical and training expertise of reading
    specialists. Together, the two will fill a void and a real need to
    provide after-school and summer reading help.
     american reads challenge--joint initiative of ed and the corporation
                       for national and community service
        The Administration designed America Reads as a joint initiative
    between the Department of Education and the Corporation for National
    and Community Service in order to leverage existing Federal resources
    and provide tools to communities that need and want them. The America
    Reads Challenge legislation would build on the strong track record of
    national service in tutoring and literacy. More than half the 25,000
    AmeriCorps members now serving work with children and youth by
    tutoring, mentoring, and running after-school and summer programs.
    Learn and Serve programs mobilize hundreds of thousands of K-12 and
    college students in service projects; many tutor younger children. The
    Senior Corps, RSVP volunteers, and Foster Grandparents work extensively
    in school settings. The America Reads Challenge calls for 11,000
    additional AmeriCorps members each year to recruit and train
    volunteers, and thousands more Senior Corps volunteers and Learn and
    Serve students to manage tutoring programs or provide tutoring.
                                 school-to-work
        Question. Some parents and interest groups are concerned that
    school-to-work programs steer students away from college and tracks
    them into specific jobs. What evidence do you have to the contrary?
        Answer. It is unfortunate that anyone would have these
    misperceptions. Today's high-skill job market demands that high school
    graduates have both advanced academic knowledge and workplace skills.
    Far from tracking students into specific careers, School-to-Work
    systems provide students and their parents with options, so that they
    can make informed choices--both about further education after high
    school and about careers.
        Many students learn better and retain more when they learn in
    context, rather in the abstract, and integrated work-based and school-
    based learning can be very effective in motivating students to learn.
    School-to-Work does not ``track'' students into set career paths. No
    one chooses a student's career path, and no student is asked to make
    final high-stakes occupational decisions. Last month, through the
    School-to-Work program, we identified five urban high schools that are
    on the cutting edge of education reform. I visited one of these
    schools--the Central Park East Secondary School in New York City. This
    school and others like it show that teachers, students, parents, the
    community, and businesses can join forces to produce outstanding
    schools that stress:
      --High academic standards and career skills;
      --A curriculum of high-level academics linked with career
            experiences;
      --Career exploration and work experiences linked to classroom
            teaching;
      --Strong partnerships between the high school and postsecondary
            institutions;
      --Adult mentors to assist students with classroom and on-the-job
            learning;
      --A safe, supportive learning environment within the school.
        Question. What steps is the School-to-Work Office taking to ensure
    parents that school-to-work programs won't preclude or discourage their
    children from going to college?
        Answer. School-to-work aims to improve the way students are
    prepared for college, careers, and citizenship. The authorizing statute
    contains numerous provisions referencing the important role of
    postsecondary education in any school-to-work system. For example, the
    school-based learning component of a school-to-work system must include
    a program of study designed to meet the same academic content standards
    the State has established for all students--standards that meet the
    requirements necessary to prepare a student for postsecondary
    education. In evaluating applications and plans from States, peer
    reviewers look specifically at the extent to which the State's school-
    to-work plan includes effective strategies for establishing linkages
    between secondary and postsecondary education.
     programs not authorized under the idea act which serve children with
                                  disabilities
        Question. In addition to programs authorized under the Individuals
    with Disabilities Education Act (IDEA), what Federal programs provide
    assistance to school districts to educate students with disabilities?
    In particular, what role does Medicaid play in serving children with
    disabilities in public schools?
        Answer. Several Federal programs provide support for educating
    children with disabilities as part of their program mandates to help
    educate children in general or to provide particular services such as
    health services. For example, about 5 percent of the children served
    through Title I of the Elementary and Secondary Education Act are
    children with disabilities.
                medicaid program services for the disabled child
        Medicaid is a major resource for financing health-related services,
    that are necessary in order to provide children with disabilities with
    access to special education services. In 1988, the Medicare
    Catastrophic Coverage Act amended the Medicaid law to make clear that
    Medicaid funds are available to pay for health-related services and
    that nothing under the Medicaid statute is to be construed as
    prohibiting or restricting the payment for services covered under a
    Medicaid State plan simply because they are on a disabled child's
    individualized education program.
        The use of Medicaid funding is most important in districts with
    limited financial resources and where large proportions of the children
    served are poor. For these districts, Medicaid funding can be a
    critical resource in serving children with disabilities.
      amount of lea assistance for disabled students provided by non-idea
                              authorized programs
        Question. What is the total amount of assistance that flows to
    local educational agencies (LEA's) under these other Federal programs
    for disabled pupils?
        Answer. We do not know how much funding from other large programs
    is provided to schools or is used by schools to pay for services.
    However, we believe that Medicaid and other health programs provide
    substantial support for related services necessary to provide children
    with disabilities access to education. The way many programs are
    structured would make accumulating such information very difficult. For
    example, Medicaid costs are supported from State and Federal funds; and
    the Head Start program requires that 10 percent of class spaces be made
    available for children with disabilities, but does not indicate any
    particular level of funding for services to these children.
        Most assistance from the Department of Education for children with
    disabilities is provided through Part B of the Individuals with
    Disabilities Education Act and through Title I Grants to Local
    Educational Agencies.
        Under Title I, funding is not tracked to individual children, and
    we do not have information on the amount that schools actually spend on
    children with disabilities. In fiscal year 1996, the Title I Grants to
    Local Educational Agencies program provided services to an estimated
    9.6 million children at an average Federal per-child cost of $700.
    Based on State-reported data for 1994-95, about 5 percent of children
    receiving Title I services were identified as having disabilities.
    Assuming that schools spent an average of $700 on each of the 9.6
    million children estimated to be served by the program in fiscal year
    1996, then of the $6.730 billion in total funding, $336 million would
    have been for children with disabilities. The actual amount used for
    disabled children receiving Title I services may be greater or less
    than this amount.
                idea--lea use of grants to states program funds
        Question. What is the most important use of IDEA funds by LEA's?
        Answer. Under the Grants to States program authorized by the
    Individuals with Disabilities Education Act (IDEA), Federal funds are
    provided to assist in paying for special education and related services
    for children with disabilities. For fiscal year 1997, the appropriation
    for Grants to States represented only about 8 percent of the excess
    cost of providing these services. Local educational agencies have great
    flexibility in determining which expenses will be paid for from Federal
    versus State or local funding sources. One LEA may use Federal funds to
    pay for special transportation costs while another uses the Federal
    funds for teachers' salaries. We do not collect information on which
    services local educational agencies have chosen to use Federal funds to
    pay for.
        Question. Are IDEA funds being effectively used by school
    districts?
        Answer. Funds from IDEA are used in conjunction with State and
    local funds to provide children with disabilities with free appropriate
    public education. The effectiveness of the use of these funds varies
    from local educational agency to local educational agency and from
    State to State. One area of concern relates to the use of funds to
    support placements in separate schools, which can involve high
    transportation costs, and, in the case of private school placements,
    tuition.
       legislation proposed to cap state administrative funds under idea
        Question. Should Congress require that a greater proportion of IDEA
    funds flow through to LEAs?
        Answer. Congress has addressed this issue in the Individuals with
    Disabilities Education Act Amendments of 1997, which passed the House
    on May 13, 1997, and the Senate on May 14, 1997, and is now awaiting
    the President's approval. This bill, which is supported by the
    Administration, would increase the proportion of funds to be flowed
    through to local educational agencies by capping the amount of funds
    that may be retained by the State educational agency. In years in which
    the percentage increase in a State's allocation exceeds the rate of
    inflation, the State may reserve an amount up to the amount it was
    authorized to retain in the previous year plus inflation. The balance
    of funds must be provided to local educational agencies.
        Question. What type of activities do State education agencies
    (SEAs) support with their set aside?
        Answer. Most States do not retain all of their set-aside funds at
    the State level, but pass a portion of these funds on to local
    educational agencies according to the Federal formula for distributing
    funds or targeted to specific local purposes. Other major uses of funds
    include operating Statewide and regional resource centers and staff
    development activities.
        equitable federal share of excess costs to serve children with
                                  disabilities
        Question. What is the equitable share of excess costs that should
    be borne by the Federal Government?
        Answer. The President's budget request for fiscal year 1998 for the
    Special Education Grants to States program is over $3.2 billion. This
    amount would provide about 8 percent of the excess cost for serving
    children with disabilities, the same level as in fiscal year 1997, and
    would provide support for an additional 101,000 children with
    disabilities requiring services. We believe that this is an appropriate
    level of funding for fiscal year 1998 under the current Federal funding
    restraints. In addition, children with disabilities will benefit from
    the other initiatives for which we have requested funds.
         impact of increased appropriationson state and local services
        Question. If Congress increased appropriations for IDEA, will that
    provide fiscal relief at the State level or local level?
        Answer. Increases in the appropriations under IDEA above the
    requested level could be used at State and local discretion to provide
    fiscal relief, subject to the requirement that, for each local
    educational agency, the spending for children with disabilities cannot
    be reduced below prior year spending levels. Additional Federal funding
    might be used to cover increases in costs or to expand services for
    children with disabilities. Under the IDEA Amendments that are now
    awaiting the President's approval, LEAs will have the authority to use
    a portion of their Federal funds to replace local funds once the
    appropriation for the program reaches $4.1 billion.
                         public charter schools program
        Question. You propose a doubling of the appropriation for charter
    schools, from $51 million for fiscal year 1997 to $100 million for
    fiscal year 1998. This compares to an $18 million appropriation 2 years
    earlier, for fiscal year 1966. How effectively can these rapidly
    increasing appropriations be used?
        Answer. The increase requested for Charter Schools in 1998 is
    consistent with the remarkable growth in the number of States with
    charter school laws and the number of charter schools across the
    country. Between 1991 and 1994, 12 States passed charter schools laws.
    In the past two years, an additional 14 States plus D.C. adopted
    charter legislation. Today well over 400 charter schools are in
    operation, up from 250 in January 1996. The number of charter schools
    will continue to grow rapidly as new States adopt legislation, States
    with recently adopted laws begin to implement their charter schools
    programs, and States that have had laws for some years reconsider
    restrictions on the number of charter schools permitted. This growth,
    combined with the fact that the Federal program is designed to provide
    schools with the start-up funding their developers say they need most
    in order to succeed, would ensure the effective use of a $100 million
    appropriation. In addition to stimulating the creation of additional
    schools, a $100 million appropriation would enable States to increase
    the size of per-school awards from an average of around $35,000 to
    between $80,000 and $100,000. This boost would help provide sufficient
    funds, per school, to facilitate the development of high-quality
    programs.
        Question. Is there evidence that the Public Charter Schools program
    is effective in stimulating the establishment of charter schools or
    adoption of charter school laws?
        Answer. While it is difficult to establish a direct link between
    the enactment of the Public Charter Schools program and an increase in
    the number of charter schools, the availability of Federal funds for
    planning and initial implementation of charter schools does seem to
    have generated more interest in starting these schools. For example,
    Kansas, which last year received an $850,000 Federal grant, has
    chartered its first school and awarded 23 planning grants after several
    years of no chartering activity. In Georgia, the number of charter
    schools has grown from three to 12 since the State received a Federal
    grant.
        It is also not clear what impact, if any, the existence of the
    Federal law has on States' decisions to adopt charter school laws. We
    would not encourage States to pass such legislation solely as a means
    of accessing additional Federal funds. Rather, we would urge States to
    develop carefully considered charter school laws, and, once that work
    is complete, Federal funds may provide some assistance to those people
    interested in developing and implementing charter schools.
              distribution of public charter schools program funds
        Question. What proportion of the States with charter school laws
    are receiving grants under this program?
        Answer. About 80 percent of States with charter school laws
    received Federal Charter Schools funding in the first two years of the
    program. The Department has not yet conducted the competition for
    fiscal year 1997 funds.
        Question. How are you allocating funds among these States--in
    proportion to their number of charter schools, their overall enrollment
    levels, or simply at your discretion?
        Answer. Public Charter Schools is a discretionary grant program.
    Peer reviewers use the statutory selection criteria to rate the quality
    of the applications submitted to the Department. The Department makes
    awards to States and other eligible applicants in accordance with the
    peer reviewers' scores.
             charter schools guidance on applying for federal funds
        Question. What guidance are you providing to States on the
    allocation of all Federal funds--not just those under the Public
    Charter Schools program--to charter schools?
        Answer. All program offices within the Department provide
    assistance to States and school districts on the distribution of
    Federal funds to public schools, including charter schools. In addition
    to this ongoing help, the Department plans to issue a guide to help
    charter schools apply for Federal program money.
                    termination of the education block grant
        Question. The Administration has proposed the termination of
    funding for the education block grant, the Innovative Education Program
    Strategies State Grants authorized under Title VI of the Elementary and
    Secondary Education Act of 1965 (ESEA). How do you justify the
    elimination of one of the most flexible and popular forms of federal
    assistance for elementary and secondary education?
        Answer. The Innovative Education Strategies Program, like its
    predecessor Chapter 2, is not well designed to support the types of
    State and local efforts most likely to result in real improvements in
    teaching and learning. The Department continues to believe that a more
    effective way to utilize scarce resources lies in targeting funds on
    comprehensive systematic reform and areas of high need.
        The most recent evaluation of the Chapter 2 program, released in
    1994, concluded that:
      --In most cases, the program had not been an impetus for systemic
            educational reform.
      --The majority of activities supported by Chapter 2 funds would have
            continued without Chapter 2 funds because these funds typically
            constituted a small percentage of any program's funding.
      --40 percent of local district funding went to the purchase of
            instructional materials which were often not tied to the
            improvement of an instructional program.
      --While nearly 75 percent of districts who used funds for
            instructional materials purchased computer hardware/software,
            only 70 percent used those computer purchases for instructional
            use.
        More recent annual reports of the program have shown no real change
    in how States and districts use their program funds.
        While the Goals 2000 program provides the same flexibility as the
    Title VI program, it makes the critical link between expenditures and
    standards-based educational reform that Title VI does not. There is no
    reason to have two separate flexible educational improvement programs,
    and Goals 2000 is clearly the authority more likely to result in real
    improvements and reforms. Therefore, the Administration proposes to
    terminate the Title VI program.
        Question. The education block grant program appears to achieve its
    popularity through being one of the few types of funds from any source
    that can be used for improvement purposes as determined by local
    educational agencies (LEAs). Do your program evaluations show the
    extent to which local schools have any other source of funds to meet
    locally determined improvement and innovation priorities?
        Answer. As noted in the previous response, the most recent
    evaluation of Chapter 2, released in 1994, found that most of the
    activities it funded would have continued without Chapter 2 funds
    because these funds typically constitute only a small percentage of any
    program's funding.
        Additionally, the Department has several programs that provide LEAs
    with funds to meet locally determined improvement and innovation
    priorities. For example, Goals 2000 provides funds to assist schools,
    communities, and States in developing and implementing their own
    strategies for improving elementary and secondary education. The
    Eisenhower State Grants program provides funding to States and school
    districts to support professional development in all the core academic
    subjects. The program gives schools the flexibility to set their own
    staff training and development priorities. The Technology Literacy
    Challenge Fund provides grants to States to assist them in implementing
    the strategies they have developed to integrate technology into the
    curricula of their schools. States have a great deal of flexibility in
    using these funds.
             reduction in federal regulatory paperwork requirements
        Question. The education block grant program has reduced Federal
    regulatory paperwork burdens to a minimum. Why not modify other Federal
    education programs to be more like it, rather than proposing block
    grant termination?
        Answer. The Department has made efforts to keep the Federal
    regulatory paperwork burdens associated with its programs to a minimum.
    The Department has attempted to maintain the flexibility afforded State
    and local educational agencies through block grant programs while
    maintaining a connection between the funds it provides and school
    reform efforts.
        An example of an effort by the Department to reduce the regulatory
    paperwork burden associated with its programs is Goals 2000. While the
    Goals 2000 program promotes the same flexibility heralded in the Title
    VI program, it makes the critical link between expenditures and
    standards-based educational reform that Title VI does not. Further,
    States have found the program to be ``user-friendly'' because of its
    regulation-free administration and the flexibility it affords them to
    build upon pre-existing reform efforts.
        Other Departmental programs, such as the Eisenhower Professional
    Development State Grants, Safe and Drug-Free Schools and Communities,
    and the Technology Literacy Challenge Fund, are also administered
    without regulations and provide State and local agencies with
    flexibility while ensuring that program funds are used to advance
    educational reforms and address critical national needs.
             federal family education loan and direct loan programs
        Question. Your Budget Justifications indicate that you intend to
    comply with the goal of an even (50-50) split in future student loan
    volume between the Federal Family Education Loan and Direct Loan
    programs. How do you intend to assure that this goal is reached and
    maintained?
        Answer. The Department plans to continue its strong customer
    service orientation and its support for both FFEL and Direct Loans. Our
    approach would let schools choose which program best suits the needs of
    their students. We currently project a 50 percent split in loan volume
    for academic year 1999-2000--the sixth year of the Direct Loan program.
    These are, of course, estimates, and will be adjusted based on
    experience.
        Question. Have you abandoned your previous goal of eliminating the
    FFEL program?
        Answer. Yes. That was a fiscal year 1996 proposal, and it was
    abandoned last year. While we continue to believe that the Direct Loans
    program has substantial inherent advantages to students, schools, and
    the taxpayer, as long as there is demand for the FFEL program we will
    support it to the best of our ability. The Administration is committed
    to preserving borrower and school benefits fostered by competition
    between the two student loan delivery systems.
        Question. Is your stated goal of a 50-50 split in loan volume
    between the Federal Family Education Loan and the Direct Loan programs
    consistent with several of your specific proposals that would reduce
    the incentives of lenders and Guaranty Agencies to participate in the
    Federal Family Education Loan program, such as reduced interest
    subsidies and default repayments to lenders, and reduced revenues for
    Guaranty Agencies?
        Answer. Our projection of a 50-50 split in loan volume between FFEL
    and Direct Loans in fiscal year 2000 is entirely consistent with our
    recent 1998 budget proposals to restructure the guaranty agency system
    for greater efficiencies and increase lender risk-sharing. We view
    these policies as strengthening the overall delivery and management of
    guaranteed student loans. Both students and taxpayers are the primary
    beneficiaries of these policies, but most participating lenders and
    guaranty agencies would also continue to earn substantial returns. For
    instance, lenders would still enjoy a 95 percent Federal guarantee
    against default, compared to 98 percent under current law--a reduction
    of only 3 percentage points. Default collection rates up to 18.5
    percent paid to guaranty agencies would be similar to the actual
    average cost the Government incurs, instead of offering what has been
    considered a perverse incentive to let loans go into default by
    allowing guaranty agencies to keep some 27 percent of every dollar they
    collect.
                     student loan guaranty agency proposals
        Question. The Guaranty Agencies are an important element of
    federal-state partnership in administering the Federal Family Education
    Loan program. Why do you offer a series of proposals to undercut the
    Guaranty Agencies, eliminating them from some of their current roles
    and reducing their revenues? Is this part of a strategy to indirectly
    weaken the Federal Family Education Loan program in favor of Direct
    Loans?
        Answer. The Department's proposals are not designed to undercut
    guaranty agencies, but to increase efficiency and hold guaranty
    agencies to performance-based standards.
        Our proposed changes to the guaranty agency system recognize that
    these State and private nonprofit entities currently act only as agents
    of the Federal Government perform any substantial insurance function.
    Guaranty agencies currently use Federal funds they hold in reserve to
    pay a small portion of each lender default claim; while the balance is
    funded through Federal subsidy payments. Under our proposals, the
    Government would pay all eligible lender default claims--greatly
    simplifying the process.
        We propose to replace the current administrative cost allowance
    (ACA), under which guaranty agencies are paid .85 percent of new loan
    volume regardless of costs incurred in relation to that volume. In its
    place, we propose two new sources of revenue: a one-time issuance fee
    based on each new loan insured by the Secretary through the agency, and
    an annual maintenance fee related to each outstanding borrower account.
    Under this approach, Federal funding would be more aligned with agency
    costs. We estimate that, in the aggregate, agencies would actually
    receive more under our proposal than they would under the current ACA
    formula.
        The Department's proposals are not intended to weaken FFEL in favor
    of Direct Loans. Our proposals to restructure the guaranty agency
    system and increase risk-sharing by lenders are designed to increase
    FFEL efficiency, reduce costs, and create an even more customer-service
    driven program. This would result in an even stronger, not a weaker
    FFEL program.
              census data and fiscal year 1997 title i allocations
        Question. Has the Department yet made its decision regarding what
    population data to use in calculating fiscal year 1997 grants for Part
    A of Title I, Elementary and Secondary Act? If not, what problems are
    being created for State and local educational agencies by this delay?
    If so, what is the decision, and the rationale for making it?
        Answer. The Department announced 1997 Title I allocations to States
    without any delays in mid-April, shortly after the Secretaries of
    Commerce and Education made the decision to follow the recommendation
    of the National Academy of Sciences with regard to the use of poverty
    estimates for fiscal year 1997 allocations. State and local educational
    agencies received notice of their allocations on the normal schedule
    and should have ample time to plan their Title I programs for the
    upcoming school year, hire staff, and purchase necessary materials and
    equipment.
        Consistent with the Title I statute, the Secretaries of Commerce
    and Education sought expert advice from the Academy on whether the
    Census Bureau's 1994 updated poverty estimates are appropriate or
    reliable for use in making fiscal year 1997 Title I allocations. Based
    on that advice, our decision was that it would be inappropriate to use
    either the updated estimates or the 1990 decennial census estimates
    alone for making fiscal year 1997 Title I allocations. Further, we
    agreed with the Academy's recommendation to utilize a combination of
    the 1990 census data and 1994 updated poverty data for these
    allocations, following the procedure outlined in the ``Executive
    Summary'' of the Academy's report, released March 21, 1997.
    Specifically, the procedure allocates Title I funds to counties on the
    basis of estimates that are obtained by averaging the poverty rates for
    1989 and 1993 and then applying the average rate to the 1994 population
    estimate for school-age children in each county. Our decision is
    explained further in the ``Report of the Secretary of Education and the
    Secretary of Commerce Concerning the Use of Updated Census Bureau
    Poverty Estimates for Title I Allocations in fiscal year 1997,''
    transmitted to the Congress on April 18, 1997.
    recommended basis for allocation of fiscal year 1997 esea title i, part
                                    a grants
        Question. A National Academy of Sciences advisory panel has
    recommended that a specific combination of 1990 Census and 1993 updated
    estimates of school-age children in poor families be used as a basis
    for allocating fiscal year 1997 ESEA Title I, Part A grants. Do you
    agree with their recommendation?
        Answer. Yes. The Secretaries of Commerce and Education agree with
    the Academy's conclusion that using either the 1990 census poverty data
    or the 1994 updated poverty data alone would not be appropriate for
    1997 allocations, and that the allocations should use poverty data
    blended from the two data sources.
        The Title I statute requires that the Department use the ``most
    recent satisfactory data available from the Department of Commerce''
    for Title I allocations. For the reasons given by the Academy's panel
    and in our report, these composite data are the most recent
    satisfactory data from the Department of Commerce.
        Question. Do you believe that you are authorized to follow such a
    recommendation to use neither the 1990 Census nor the 1993 updated
    population estimates alone?
        Answer. Yes. We have looked very closely at the issue and believe
    there is ample authority under the statute to follow the NAS
    recommendation.
                                     ______

                  Questions Submitted by Senator Slade Gorton
       individuals with disabilities education act--federal per student
                                   allocation
        Question. Secretary Riley, what is the fiscal year 1997 Federal per
    student allocation under the statutory pass-through requirement to the
    school districts for IDEA Part B, State Grants?
        Answer. We estimate that the average amount provided per student
    served with a disability to each State, the District of Columbia, and
    Puerto Rico from the fiscal year 1997 appropriation will be $525. Of
    this amount, at least 75 percent, or $394 must be passed through to
    local educational agencies.
                per student evaluation and iep development costs
        Question. What is the average per student cost, based on available
    information and studies from the Department of Education, for initial
    identification, evaluation, and development of the IEP?
        Answer. The Special Education Cost Study conducted by Decision
    Resources Corporation for the Department of Education indicated that
    the average cost of the initial evaluation and Individual Education
    Program (IEP) development for a student with a disability was $1,200 in
    the 1985-86 school year. Based on increases in the average per pupil
    expenditure for educating children and inflation rates, the cost for
    these activities in the 1997-98 school year would be about $2,200.
       state assistance for disabled students from noneducational agency
                                   resources
        Question. Can the Secretary discuss the reasons why some States
    provide interagency financial assistance to school districts for the
    costs of health and other related services of disabled children, while
    other States provide virtually no such financial assistance from
    noneducational agencies of the State?
        Answer. There are many reasons why States vary in the amount of
    assistance provided from noneducational agencies that is used for the
    cost of health and other related services. One of the major factors is
    the extent to which State educational agencies and State health
    agencies have been able to work together to coordinate their efforts to
    provide services. Billing procedures between educational and health
    agencies are not always clear and there is often a lack of agreement
    regarding which services various agencies are responsible for
    providing. Another factor that limits health agency support for
    education related services is that educational and health agencies
    often have different standards for services. For example, IDEA often
    requires that services be provided by personnel that meet higher
    standards than would be required for providing Medicaid services.
        States' policies regarding programs such as Medicaid also have a
    direct impact on the extent to which States provide assistance for
    health and other related educational services. States that provide
    Medicaid coverage for families at higher income levels have a more
    extended range of children who can be provided health related
    educational services from Medicaid funds.
        The IDEA Amendments of 1997 would require States to take specified
    actions to ensure that LEAs have access to funds from noneducational
    agencies which have been assigned responsibility by Federal or State
    law, State policy or by interagency agreement to provide special
    education or related services. These services include assistive
    technology devices and services, supplementary aids and services, and
    transition services.
         public comment and notification ofdepartmental policy letters
        Question. How does the Department provide for public comment and
    timely notification to school districts of interpretive rules issued
    through Department policy letters?
        Answer. The Department's Office of Special Education Programs
    (OSEP) issues policy letters in response to specific inquiries it
    receives from Federal, State, or local legislators; State or local
    educational agencies; parents; teachers; advocacy organizations; or
    other interested parties. When asked a specific question, OSEP provides
    its interpretation of the particular statutory and regulatory
    requirements of the Individuals with Disabilities Education Act (IDEA)
    in the context of the particular factual situation or request presented
    by the inquiry. These responses explain how OSEP would apply the
    relevant legal requirements to the particular issue presented, and, in
    a given context, describe what OSEP considers to be necessary to comply
    with the IDEA requirements.
        While regulations must be promulgated through certain procedures
    prescribed by the Administrative Procedures Act, including notice and
    comment, these procedures do not apply to OSEP policy letters, which
    interpret the application of current rules to particular situations.
    Regulations create new law, rights or duties while policy letters only
    give the Department's interpretation of what the underlying statutes
    and regulations mean.
        Policy letters are sent to the individual, organization, or entity
    who requested OSEP's opinion. Generally, a copy of the policy letter is
    also sent to the relevant State educational agency. OSEP policy letters
    that include new policy clarifications that might be applicable to more
    than one discrete situation have been widely disseminated to States and
    organizations representing interested parties, such as school
    districts, and have been published by a widely used commercial
    reporting service.
        Under the IDEA Amendments of 1997 that were passed by the House on
    May 13, 1997, and the Senate on May 14, 1997, and are now awaiting the
    President's signature, the Department will, on a quarterly basis,
    publish in the Federal Register, and widely disseminate to interested
    entities through various additional forms of communication, a list,
    including topic and other summary information, of all policy letters
    sent during the previous quarter. In addition, the Department will
    widely disseminate to State and local educational agencies, parent and
    advocacy organizations, and other interested organizations all policy
    letters that raise an issue of general interest or applicability of
    national significance to the implementation of IDEA and will, within
    one year, issue written guidance on that policy or interpretation
    through such means as the Secretary determines appropriate.
                    evaluations required by idea regulations
        Question. What is the average per child cost and the total national
    expenditure for triennial evaluations required by the IDEA regulations?
    Also please cite the statutory authorization for this administrative
    requirement.
        Answer. The Department does not collect data on the costs of
    triennial evaluations. However, a study conducted several years ago in
    the State of Michigan found the average cost of these evaluations to be
    about $750. Estimating a national average cost from this study has many
    inherent problems. We do not know whether the costs in Michigan are
    typical of other States though we do know the average per pupil
    educational expenditures for children in Michigan are higher than in
    the Nation as a whole. At the same time, the cost of evaluations in
    Michigan and the Nation has probably increased since the study was
    done. About 5.6 million children with disabilities were served by
    States under the IDEA in the 1995-96 school year. However, in any given
    year only a small proportion of children would receive a triennial
    evaluation. Many children would have been receiving services for less
    than three years. Others may have received evaluations more frequently
    than every three years because such evaluations were deemed
    appropriate. For others, their triennial evaluations would have been
    conducted in a prior school year. Taking all of these factors into
    consideration, we believe that the total expenditure for triennial
    evaluations was probably about $500 million for the school year 1995-
    96.
        The triennial evaluation required in regulations at 34 CFR 300.534
    ensures that a child who has been identified as eligible for special
    education and related services continues to be eligible for those
    services, and that the services provided in accordance with the
    individualized education program are appropriate for addressing the
    unique needs of the child. The statutory basis for this requirement is
    section 612(2)(C) of the Individuals with Disabilities Education Act,
    which requires all children in need of special education and related
    services to be evaluated, and sections 602(18) and 614(a)(5), which
    require that special education and related services be provided in
    accordance with an individualized education program that addresses each
    child's unique needs.
                      departmental administrative expenses
        Question. Mr. Secretary, what percentage of funds appropriated to
    the Department of Education are used for administrative costs?
    Furthermore, what percentage of the funds the Department of Education
    allocates to the States are reserved for administrative purposes?
        Answer. A very small proportion of Federal education funding goes
    to administrative costs at the Federal or State levels. Less than 2
    percent of the Department of Education budget is spent on Federal
    administrative costs. Over 98 percent of Federal education funds are
    sent to States and local communities, and roughly 93 percent of Federal
    funds for elementary and secondary education reach school districts and
    other agencies that provide services.
        Overall, States retain about 3.6 percent of the funds for State-
    level activities, including program administration, technical
    assistance, and State-operated programs. For example, States retain
    only 1 percent of Title I, but somewhat larger percentages for Safe and
    Drug-Free Schools (6 percent) and the IDEA programs serving children
    with disabilities (7 percent). Finally, to help get more dollars to the
    classroom, in our legislative proposals we have recommended reducing
    the funds that States and localities can use for administration.
                            american reads challenge
        Question. The America Reads program consists of $2.75 billion in
    mandatory spending over the next five years, of which $1.75 billion
    would be used to fund 30,000 after-school reading specialists and
    materials. Over the same period, an additional $1 billion from the
    Corporation for National Service will fund AmeriCorps volunteers to
    recruit and organize one million reading volunteers. Why do we need two
    separate programs to accomplish the same objective?
        Answer. The Administration designed America Reads as a joint
    initiative between the Department of Education and the Corporation for
    National and Community Service in order to leverage existing Federal
    resources and provide tools to communities that need and want them to
    help children learn to read independently and well by the end of the
    third grade. We have developed the America Reads Challenge legislation
    in response to the needs of school and community literacy partnerships.
    Last fall, officials at the U.S. Department of Education met with
    parent groups, businesses, leading principals and teachers, literacy
    groups, and community organizations and asked them what they thought
    was needed to help America's children learn to read successfully. The
    general and overwhelming response focused on two things: (1) the need
    for trained reading specialists to train volunteer tutors; and (2) the
    need for organized tutor coordinators to help match tutors with
    children. What is unique about the America Reads Challenge legislation
    is that it builds on this feedback and will provide the resources
    necessary to implement and carry out successful school and community
    reading programs that extend learning time for children who need extra
    help to read well, by bringing together the Education Department's
    knowledge and expertise with reading programs and the Corporation's
    demonstrated success in developing and coordinating effective tutoring
    and volunteer programs.
        Under the America Reads Challenge Act, the Corporation for National
    and Community Service would help local reading programs recruit and
    organize volunteer tutors. The tutors, coordinating with the in-school
    reading program, would provide individualized after-school, weekend,
    and summer reading tutoring for children who want and need the extra
    help. We expect these tutors to help link the reading program, teacher,
    school, child, and family. The funding for the Department of Education
    will provide the technical and training expertise of reading
    specialists. Together, the two will fill a void and a real need to
    provide after-school and summer reading help. At the local level,
    however, reading programs will function as a single, integrated effort.
        We estimate that our budget request for the America Reads Challenge
    will support 25,000 reading specialists and tutor coordinators--
    including 11,000 AmeriCorps members. Under the recent budget agreement
    between the White House and Congressional leadership, America Reads
    would be paid for entirely with discretionary funds.
          effectiveness of technology in improving student achievement
        Question. Computers are rapidly becoming more and more important to
    the everyday functioning of millions of Americans. They are also,
    however, very expensive to purchase and maintain. The Administration
    proposes spending more than $2 billion for technology over the next
    five years. What information does the Department of Education have
    regarding the ways in which technology improves academic achievement?
        Answer. The evidence is strong that, used properly, computers and
    other educational technologies can be effective in expanding students'
    opportunities, motivation, and achievement. Technology can change the
    content of instruction and enable the learner to develop skills not
    possible through conventional instruction. Technology can also affect
    student achievement indirectly, by improving student assessments,
    professional development, and family involvement. While many of the
    Department's technology programs are too new to provide conclusive
    evaluative data, a number of independent studies indicate that
    technology has proven effective in the following areas:
        Basic Skills.--Computer-assisted instruction (CAI) allows students
    to proceed at their own pace, and provides instruction and instant
    feedback based on the student's individual needs. In a long series of
    studies, students in classrooms with CAI outperformed their peers
    without CAI on standardized tests of basic skills achievement by as
    much as 30 percent. Evaluations have demonstrated that technology
    improves basic literacy, math, and science skills, by engaging students
    in multidisciplinary tasks, and by bringing material ``to life,''
    enhancing students' ability to both remember and understand what they
    read and hear.
        Advanced Skills.--Educational technology helps students develop
    more advanced skills, such as the ability to conduct research, organize
    information, recognize patterns, draw inferences, and communicate
    findings.
        Accommodating Student Needs.--Assistive technologies can help
    students with special needs to function in mainstream classes and
    communicate with their peers. In one study, learning disabled adult
    students receiving videodisc-delivered algebra instruction
    significantly outperformed students receiving textbook instruction on
    two different tests. Technology has also improved the ability to teach
    English and other second languages. Distance learning allows students
    in small and geographically remote schools to take a wide range of
    courses, including Advanced Placement courses. It also allows migrant
    students to continue their education without interruption, resulting in
    higher completion rates.
        Access to Instruction and Information.--Networks and the Internet
    provide students with access to world-wide libraries and information
    resources. In addition, linking schools through telecommunications
    networks allows geographically dispersed classes to work
    collaboratively to develop and implement projects and to learn more
    about the social, cultural, and physical world. An evaluation of one
    such project demonstrated significant gains in students' ability to
    organize, represent, and interpret data, as well as gains in knowledge
    of specific content areas.
        Processing and Presenting Information.--Software tools such as word
    processors, spreadsheets, databases, encyclopedias, and graphics/
    presentation programs increase the ability of students to prepare
    studies, projects, and homework, and to communicate this information to
    others. Technology also makes it easier for students to edit written
    work, resulting in higher quality writing.
                                     ______

               Questions Submitted by Senator Christopher S. Bond
        preparation of high-school students for postsecondary education
        Question. The Federal Government spends $7 billion in remedial
    education. Statistics show that 29 percent of all freshmen take a
    remedial course when they enter college. Remedial courses are required
    by 41 percent of the freshmen at community colleges, 26 percent at two-
    year private colleges, 22 percent at four-year public institutions, and
    13 percent at four-year private institutions (Forbes, February 10,
    1997).
        These statistics are extremely alarming and send the message that
    our young people are not being properly prepared during their high-
    school years. What is the Department doing to encourage better
    preparation at the high-school level?
        Answer. First of all, Department programs are encouraging better
    preparation at the high-school level by helping States and school
    districts build a strong foundation for better student achievement at
    all levels of education. Programs authorized by the Elementary and
    Secondary Education Act (ESEA), the Goals 2000: Educate America Act,
    and the School-to-Work Opportunities Act are based on the recognition
    that significant achievement gains at any education level are not
    likely to occur without fundamental education reforms to create and use
    high standards as the starting point for improving school and student
    performance. These programs are helping States and local communities
    create high expectations for all their elementary and secondary
    students, and providing resources for reshaping local curriculum to
    reflect high State standards and to train teachers to lift students up
    to those standards. Title I, the largest Federal elementary and
    secondary program, is an important part of this effort. In 1995, the $7
    billion Title I program shifted its focus away from providing remedial
    instruction intended to bring low-achieving students up to minimal
    levels of competency in basic skills to a completely new objective of
    helping disadvantaged students benefit from educational reforms
    stressing high standards.
       providing extra education program resources at key milestones in
                                   education
        Second, since the pathway to academic success is set long before
    students enter high school, Department programs are providing the extra
    resources that poor and low-achieving schools and students need to
    perform well at key milestones in their education. One of the first
    objectives is that all students need to be able to read independently
    and well by the fourth grade, or they will be unable to read to learn
    other subjects. They also need a strong background in challenging
    mathematics by the eighth grade, or they will be unable to take the
    rigorous courses in high school that prepare them for college. Also, to
    help schools meet the standards and measure their progress in these
    important areas, the Department is leading an effort over the next two
    years to develop the national tests of student achievement in reading
    and math proposed by the President. These voluntary national tests for
    fourth grade reading and eighth grade math will go a long way toward
    ensuring that challenging standards become a reality for all students.
      preparing students for knowledge-driven economy of the 21st century
        Third, in addition to strengthening the foundations for learning
    that affect student achievement in high school, some Department
    programs are focusing specifically on helping high-school students
    obtain the knowledge and skills to pursue and complete post-secondary
    training and compete for high-paying jobs in the knowledge-driven
    economy of the 21st century. For example, in the fiscal year 1998
    budget we are requesting:
      --$202 million for the Upward Bound program, which prepares high-
            school students and veterans to pursue and complete their
            education beyond high school. The typical Upward Bound
            experience is a highly structured, demanding program of
            supplemental academic instruction. The average program
            participant receives 160 hours of supplemental instruction a
            year. In contrast to the early 1970s, when most Upward Bound
            instruction had a remedial focus, the program's current
            emphasis includes course work that supports the high-school
            curriculum and advanced instruction. Services also include
            Saturday classes, tutorial and counseling sessions, cultural
            enrichment activities, and a 6-week summer component. Also,
            some funds are used to establish mathematics and science
            regional centers to encourage students to pursue postsecondary
            degrees in these fields.
      --$200 million for School-to-Work Opportunities, to help all 50
            States fully implement their strategies for preparing students
            for work and further education. School-to-work is a promising
            educational strategy that aims to improve learning by
            connecting what goes on in the high-school classroom to future
            careers and to real work situations. Through the School-to-Work
            Opportunities Act, operated through a partnership between the
            Departments of Education and Labor, every State has access to
            seed money to design and implement a comprehensive school-to-
            work transition system for their students. Students in School-
            to-Work systems are expected to meet high State academic
            standards and, in addition, earn portable, industry-recognized
            skill certificates.
      --$6 million for a new Advanced Placement Fee program to supplement
            State efforts to subsidize or, in some cases, pay the full cost
            of advanced placement tests for low-income high-school
            students. The program will help raise academic standards by
            encouraging all students to challenge themselves and take the
            tough courses. It will also help fight the tyranny of low
            expectations, which keeps so many students from developing to
            their full potential.
                               hope scholarships
        Question. Will the Hope Scholarships proposal encourage grade
    inflation by linking the ``B'' average to the $1,500 tax credit?
        Answer. I do not believe this proposal will encourage grade
    inflation. As with numerous private and institutional merit grants and
    scholarships, professors would be unlikely to know which students are
    first-year HOPE Scholarship recipients.
        In addition, in enacting the current ``satisfactory academic
    progress'' requirement for participation in all of the Department's
    student aid programs, i.e. maintaining a ``C'' average, or its
    equivalent, Congress had some concern about possible grade inflation,
    and requested a study by the Department. The resulting study found that
    the ``C'' average rule has not resulted in grade inflation.
        Georgia reports no evidence of grade inflation related to the
    Georgia Hope Scholarship. In fact, some 50 percent of Georgia Hope
    recipients lose their aid in the second year due to failure to meet the
    ``B'' average requirement.
        Question. How will this proposal prevent further tuition inflation
    which could result by schools raising tuition to capture new funds?
        Answer. There is no evidence to suggest that increases in student
    aid result in increases in tuition. In fact, the Federal student aid
    programs have increased their greatest during those periods of time
    when tuitions have remained the most stable.
        Furthermore, the tax credit would be targeted to specific
    populations, leaving unaffected large segments of students, including
    upperclassmen, graduate and part-time students, and those with family
    incomes above the cutoffs. Out of some 14 million postsecondary
    students, there would be only 4 million HOPE recipients.
        Question. What is your response to criticism from the higher
    education community that your plan will increase access to higher
    education for low-income students but will simply subsidize students
    who would have attended college regardless.
        Answer. The HOPE Scholarship is targeted towards middle-class
    families who are struggling to pay their children's college costs.
    Middle-income students are only half as likely to attend college as
    students from upper-income families, showing that financial barriers to
    college continue to exist. The HOPE proposal will help reduce the
    increasing amount of debt families have incurred to pay these costs by
    providing needed tax relief and will induce students to attend college
    who otherwise would not have.
                                   impact aid
        Question. The Department's budget substantially increases funding
    for general Federal assistance to school districts at the same time it
    proposes to dramatically reduce Impact Aid payments and eliminate
    Federal property payments which represent an obligation of the Federal
    Government to mitigate the adverse effects of its activities on local
    school districts. Missouri would be greatly impacted by the reduction
    and elimination of funding for Impact Aid payments. What is the
    Department's reason for such a reduction and elimination of funding for
    Impact Aid payments and what will happen to local school districts?
        Answer. Our budget request would not increase funding for general
    Federal assistance to school districts. Rather, we have proposed to
    terminate those programs that provide general, untargeted support, such
    as the Title VI education block grant and the portions of the Impact
    Aid program that provide assistance on behalf of students whose
    enrollment does not impose a significant burden on school districts.
    And we have proposed increases for programs that focus on the needs of
    the disadvantaged, children with disabilities, and other special
    populations, or that address national priorities like educational
    technology, safe and drug-free schools, and professional development.
        The relatively small reduction for Impact Aid (10 percent) would
    adequately fund a better targeted program. It would limit Basic Support
    Payments to those on behalf of children living on Indian lands and
    children of members of the uniformed services who live on Federal
    property. These two categories of children present the greatest burden
    to local educational agencies, and our request would provide at least
    level funding, and in some cases increased payments, for school
    districts that educate them. We have also proposed to level-fund the
    Impact Aid disability payments and to provide badly needed funds for
    the maintenance and upgrading of federally owned schools. We do not
    propose to fund the Section 8002 Payments for Federal Property program
    because it duplicates the 8003 payments on behalf of federally
    connected children.
                         school construction initiative
        Question. The President has proposed a $5 billion new Federal
    program for local school construction. I believe we all recognize that
    many schools are in dire need of repair and renovation. However, I do
    have some concerns about the proposal. Would this initiative increase
    school construction costs by imposing costly government mandates like
    the prevailing wage requirement (Davis-Bacon) to be paid on federally
    funded projects, ultimately costing taxpayers more providing students
    with less?
        Answer. As is commonly the case with Federal construction programs,
    our program would be covered by the Davis-Bacon Act, which requires
    that laborers and mechanics who work on the construction projects be
    paid wages at rates not less then the prevailing wages for the same
    type of work on similar construction in the locality.
        The purpose of the Davis-Bacon rules is to ensure that federally
    funded construction activities do not have the unintended effect of
    depressing wages in a community. According to the Department of Labor
    (DOL), there is no real evidence that the Act drives up local wages;
    studies that purported to show such a cost are over a decade old and do
    not reflect changes in the construction practices and in DOL's
    administration of the Act. Moreover, 30 States, and a number of
    localities, have their own prevailing wage laws and would not be
    affected, at least to some extent, by the inclusion of Davis-Bacon
    coverage in our construction program. Nor would school districts that
    receive funding from our Impact Aid program; their school construction
    activities are already covered by Davis-Bacon rules.
       parents as teachers and home instruction for preschool youngsters
                                    programs
        Question. As you know, Secretary Riley, the purpose of Title IV of
    the Goals 2000: Educate America Act is to increase parents' knowledge
    of and confidence in child-rearing activities, to strengthen
    partnerships between them and professionals in meeting educational
    needs of children aged birth through 5, to enhance the developmental
    progress of those children, and to fund at least one parental
    information and resource center in each State. To accomplish the
    parenting goals, the statute requires that grantees use part of their
    funds to establish, expand, or operate Parents as Teachers (PAT) or
    Home Instruction for Preschool Youngsters (HIPPY) programs.
        Three-quarters (21 to 28) of the original grantees chose to
    implement the Parents as Teachers program, a model for which staff
    receive training from the Parents as Teachers National Center at
    locations around the nation. Despite the substantial size of the
    grants, however, many grantees appear to be making only minimal efforts
    to implement Parents as Teachers programs, as indicated by
    participation in that training.
        I am disappointed in this outcome, and it is particularly
    surprising in light of the President's new emphasis on birth to three
    and the PAT program. What steps will the Department take with new
    grantees being awarded this spring to assure that Parents as Teachers
    programs are more faithfully implemented?
                flexibility in parenting program implementation
        Answer. In implementing education legislation passed by the 103rd
    Congress, the Department was guided by a policy of ensuring that grant
    recipients have greater flexibility than they have had in the past to
    design and implement programs suited to their particular needs.
    Consequently, we did not issue regulations for many of these programs,
    including the Parental Assistance Program authorized under Title IV of
    Goals 2000. Applicants for grants under the program must comply with
    statutory requirements, but are permitted to conduct a variety of
    activities to meet the needs of preschool and school-aged children
    throughout the State or a large region of the State. To meet these
    needs, Parent Centers generally allocate resources for awareness and
    information dissemination activities as well as parent training.
        The statute does not specify the amount or percentage of grant
    funds to be spent on the Parents as Teachers or Home Instruction for
    Preschool Youngsters programs, and the Department has not gone beyond
    the statute to impose such a requirement. The amount of funds budgeted
    for PAT or HIPPY varies widely among the Parent Centers and, in fact,
    Centers in some States (for example, Iowa, New Jersey, and Oklahoma)
    have increased or are planning to increase the amount of funds
    initially budgeted for these activities.
        We continue to advise grantees that the PAT and HIPPY programs must
    be an integral part of a Center's overall activities, and we will
    review this aspect of project performance in the annual reports that
    the grantees will submit this summer. Also, as we review the
    applications currently under consideration for funding, we will ensure
    there is a clear plan to fund and implement these elements as
    substantial program components.
                                     ______

                 Questions Submitted by Senator Larry E. Craig
                           impact aid budget request
        Question. Since 1950, the Federal Government has recognized its
    commitment to local school districts whose tax base is heavily impacted
    by a Federal presence. Yet, the Administration's proposal slashes over
    $31 million from last year's total and provides no funding for ``b
    students.'' What is the Administration's explanation for turning its
    back on these students?
        Answer. We are requesting payments only for those children for whom
    the Federal Government has a primary responsibility: children of
    military families who live on Federal property and children living on
    Indian lands. Most of the ``b'' children live on private property, the
    taxes from which support their local schools. Because local property
    taxes are the principal source of local funds for schools, we believe
    that communities are adequately compensated and do not require
    additional Federal assistance.
       impact of privatization of military housing on impact aid request
        Question. What impact does the Administration anticipate the
    privatization of military housing to have on its impact aid request?
        Answer. Section 8003 of the Impact Aid statute authorizes payments
    to school districts to compensate partially for the costs of educating
    federally connected children. The principal justification for these
    payments is that the Federal Government has removed local property from
    the community's tax rolls, thus reducing the local property tax base
    available to support education. In general, the current Impact Aid
    formula provides larger payments on behalf of children who live on
    Federal property and whose parents work on Federal property or are in
    the uniformed services. Smaller payments are provided for federally
    connected children, including military dependents, who live on
    privately owned property in the local community.
        In recent years, the Department of Defense has pursued a variety of
    arrangements to provide housing for military families. Some of these
    arrangements have characteristics of ``on-base'' housing but are not
    actually located on tax-exempt Federal property. For example, Section
    801 of the Military Construction Authorization Act of 1984 authorized
    an arrangement under which a branch of the military could contract with
    a private developer to build family housing. The military branch then
    agreed to lease the housing for a number of years. When housing was
    built under this authority, the developer sometimes leased base
    property on which to construct the housing and continued to own the
    housing but not the underlying land. In such a case, the housing is
    eligible Federal property for Impact Aid purposes because the
    underlying land is tax-exempt due to its Federal ownership. In other
    cases, however, developers built section 801 housing off-base on
    privately owned or other non-federally owned land. In those instances,
    the housing does not qualify as Federal property for Impact Aid
    purposes because the land on which the housing is located generates, or
    could generate, local property taxes. The Departments of Education and
    Defense agree that housing facilities that generate taxes or revenue
    are not placing a burden on these school districts that would warrant
    higher Impact Aid payments.
        Question. If students living in privatized military housing were
    reclassified as ``b students,'' how would the Administration's request
    be changed?
        Answer. If military families live in houses located on tax-exempt
    Federal property, their dependents are eligible to be counted as ``a''
    students for Impact Aid purposes. If their housing is off-base on
    privately owned land that could generate local property taxes, their
    children would be classified as ``b'' students. The possible changing
    status of any of these children should not necessitate an amended
    budget request for 1998.
                              star schools funding
        Question. The administration's proposal suggests that cuts in Star
    School funding might be made up by other technology-based programs.
    What specific programs did the administration have in mind and is there
    any guarantee that current Star Schools would receive funds through
    these other programs?
        Answer. The reference in the budget request was primarily to the
    Technology Innovation Challenge Grants program, for which the
    Administration requested $75 million, an increase of $18 over the
    fiscal year 1997 level. This program supports the development of
    innovative educational technologies and their integration into the
    classroom. In light of recent developments in network and satellite
    technologies, the Department is carefully examining how the Challenge
    Grants, Star Schools, and other technology programs can work together
    for the greatest impact. However, no current Star Schools projects will
    be discontinued because of the decreased funding request. The funds
    requested for fiscal year 1998 will be used to continue the school
    completion grants awarded in 1996, as well as funding dissemination and
    leadership activities and a large-scale evaluation. The request will
    also fund the second year of the grants to be awarded this summer. The
    decrease simply reflects the Department's decision not to make any new
    awards, because the grants awarded in 1997 will be in the first year of
    five-year awards.
                        technology training for teachers
        Question. The University of Idaho is part of a consortium, which
    has submitted a proposal through the Fund for Improvement of Post
    Secondary Education (FIPSE) program to examine means of integrating the
    use of technology into teacher education programs. It is very important
    that our teachers, both those currently teaching and those studying to
    become teachers, learn how to use the new technologies. What is the
    administration doing to ensure that this training is available?
        Answer. Training teachers in the effective integration of
    technology in the classroom is one of the Department's four main
    technology goals. In the area of preservice training, the Department is
    currently working on proposals for the reauthorization of Title V of
    the Higher Education Act that focus on the recruitment, initial
    preparation, licensure, and induction of K-12 educators. Although the
    details have not yet been determined, technology training may be part
    of this proposal. In addition, FIPSE will continue to solicit
    applications that improve education through the use of technology.
           federal programs providing technology trainingfor teachers
        The Department is supporting technology training, primarily for
    existing teachers, through the following programs:
      --Technology Innovation Challenge Grants: These grants support
            partnerships of business, industry, and local schools in the
            development of innovative approaches to improving student
            achievement with technology, in part through new and more
            effective professional development.
      --Technology Literacy Challenge Fund: The Fund provides state formula
            grants in order to help build the infrastructure necessary for
            integrating technology into the classroom. States must submit
            comprehensive proposals which include teacher training in order
            to receive funding.
      --Regional Technology in Education Consortia (RTEC): These consortia
            provide professional development, develop training resources,
            and work with institutions of higher education to establish
            preservice programs in the use of educational technology.
      --Star Schools: These grants support partnerships which use distance
            learning to provide training for teachers in both core subject
            areas and the effective use of technology in the classroom.
      --Telecommunications Demonstration in Mathematics: Funds support PBS
            Mathline, a program that provides professional development
            through high-quality video, online teacher networks, and other
            online interactions.
      --Eisenhower Regional Mathematics and Science Consortia and
            Eisenhower National Clearinghouse (ENC): The consortia and ENC
            have created a national network to support mathematics and
            science reform. As a part of their work, they help educators
            use technology to access information on science and mathematics
            and, to a lesser extent, provide assistance in using technology
            in the classroom.
                                     ______

                    Questions Submitted by Senator Herb Kohl
                         after-school learning centers
        Question. I am interested in the 21st Century Community Learning
    Centers program. Your budget proposes $50 million for that program to
    provide comprehensive after-school programming. Given the new welfare
    law work requirements and the limits of child care availability to
    children under six, kids over six could basically be left home alone or
    on the streets. Structured after-school care is critically needed and
    this program could help. In many areas comprehensive community based
    after-school programs have been working to involve the schools and
    secure needed resources. Would you agree that in some cases it might
    make more sense to encourage collaboration with quality programs off
    school grounds, rather than starting up totally new programs?
        Answer. The After-School Learning Centers program would encourage
    collaboration between schools, existing centers, and other community-
    based organizations. However, there are several reasons why schools are
    the designated location for the centers. First, schools are convenient
    and accessible to students and parents. Second, schools have much of
    the resources needed for such a program, resources which are often
    underutilized during non-school hours. Third, school-based centers
    result in increased community and parent involvement in the school.
    Finally, locating centers within schools will help ensure that the
    centers maintain a strong academic focus. The after-school centers are
    intended to provide academic assistance in core subjects and enrichment
    activities, in areas such as art, music, and technology.
        Question. Will this initiative seek or require collaboration where
    community centers already exist?
        Answer. The program strongly encourages collaboration between
    various community entities, regardless of whether community centers
    already exist. If community centers exist within schools, they may
    apply for funding to expand their current programs. The law requires
    schools to describe their collaborative efforts in their applications.
        Question. Will funding be available through this initiative for
    community-based after-school programs off school grounds?
        Answer. No. The authorizing legislation defines learning centers as
    existing within a public elementary or secondary school building.
           interagency collaboration on school-age day care programs
        Question. Are you collaborating with the Department of Health and
    Human Services (HHS) on this and other opportunities to expand
    availability of school-age care?
        Answer. The Department has worked extensively with HHS to
    coordinate currently existing programs and to avoid duplicative
    efforts. In support of this program, HHS has advised on the program
    priorities and will assist the Department in reviewing applications and
    planning a technical assistance network that can help grant recipients
    share effective strategies. The Department is communicating with other
    agencies as well.
                  title v, hea--programs for teacher training
        Question. Title V of the Higher Education Act has received scant
    attention and minimal funding. Programs within Title V have the
    potential to enhance the training of teachers and encourage talented
    individuals to pursue a career in teaching. Does the Department of
    Education support reauthorization of Title V, and will you push for
    funding to enhance teacher training?
        Answer. The Department is preparing a reauthorization proposal for
    Title V, and we do plan to seek funding for it in fiscal year 1999.
    Because the professional development needs of the existing teaching
    force are addressed by the Eisenhower Professional Development program,
    we are planning to focus our Title V proposal on the ``front end'' of
    the process; that is, on recruitment, preservice education, licensure,
    and induction. While the existing array of (largely unfunded) Title V
    programs are not well targeted on needs in this area, we believe that
    well-conceived Federal programs can help strengthen teacher education
    and attract more talented students into teaching. We are also looking
    for vehicles through which to attract more minority candidates to the
    teaching profession, improve the training of school principals and
    other administrators, enable teacher aides and other paraprofessionals
    to achieve full certification, and help more teacher training
    institutions adopt the practices and programs of the best institutions.
             teacher training necessary at all levels of education
        Question. Do you believe that teacher training programs should have
    an emphasis on early childhood education?
        Answer. We believe that the preparation of preschool teachers can
    be one focus of the new Title V, particularly because of the new
    research on the importance of learning in the earliest years of life
    and the well-documented problems that preschool programs encounter in
    finding qualified staff. But early childhood education should not be
    the only focus. Recent reports on teaching, such as the report of the
    National Commission on Teaching and America's Future, have found
    problems with the recruitment, preparation, licensure, and induction of
    teachers at all levels, not just early childhood. In addition, public
    schools will need to hire some two million new elementary and secondary
    teachers in the next decade, and there has been no national response to
    this problem. Because of these concerns, we have elected to look at
    issues pertaining to the preparation of the entire continuum of
    preschool, elementary, secondary teachers.
                   federal student loan forgiveness programs
        Question. One of the main problems affecting the quality of early
    childhood education is the lack of access to training for educators and
    the lack of rewards when training is completed. As a result, the field
    of early childhood education is characterized by high turnover and low
    pay. An option to create incentives for service in early childhood
    education is to expand loan forgiveness for those who make a commitment
    to teach. Has the Department considered expanding loan forgiveness
    through the Perkins Loan Program, the Direct Lending Program, or other
    programs?
        Answer. The Department is considering various alternatives to
    attract early childhood educators. Currently, there are two primary
    Federal vehicles for assisting individuals who have college debt and
    take, or want to take, low-paying jobs such as may be the case for
    early childhood teachers and educators. The first is income-contingent
    repayment of student loans through the Direct Student Loan program.
    Flexible Direct Loan repayment terms allow students to choose their
    occupation based on their own interests and abilities, without fear of
    being overwhelmed with debt and defaulting on their loans.
    Additionally, students holding guaranteed student loans are entitled to
    consolidate into the Direct Loan program and gain access to income-
    contingent repayment.
        The second statutory vehicle is the ``economic hardship
    deferment,'' under which borrowers may suspend payments for up to three
    years; meanwhile, the Federal Government pays borrower interest on
    subsidized loans while interest accrues on unsubsidized loans. This
    benefit is available to any Direct or FFEL loan borrower whose income
    or combination of income and debt subjects them to economic hardship.
        level of loan forgiveness availableto early childhood educators
        Question. What level of loan forgiveness is currently available for
    early childhood educators?
        Answer. The Perkins Loans program offers nine criteria for which
    loans may be partially or fully canceled. Three of these are targeted
    on early childhood educators:
      --1. Borrowers teaching special education classes to young children.
      --2. Borrowers providing early intervention services that combat
            developmental problems facing infants and toddlers with
            disabilities.
      --3. Head Start educational staff.
        The Perkins Loan cancellations occur in increments over a period of
    time. Those teaching special education classes or providing early
    intervention services have their loans fully canceled after five years
    of service, while Head-Start educational staff have their loans fully
    canceled after seven years.
                   effectiveness of loan forgiveness programs
        Question. What is the experience of the Department on loan
    forgiveness programs, and what are your views on an expansion of loan
    forgiveness for early childhood teachers with a strong service
    requirement?
        Answer. The Department does not have comprehensive data showing how
    effective Perkins Loan cancellations have been in attracting early
    childhood educators. However, several evaluation studies of Federal and
    State programs that have used loan forgiveness provisions to attract
    teachers, or to encourage physicians and lawyers to serve underserved
    communities, have concluded that loan forgiveness provisions generally
    are not effective in achieving these goals.
                                     ______

                 Questions Submitted by Senator Robert C. Byrd
                       robert c. byrd honors scholarships
        Question. Is rewarding excellence in achievement, the purpose of
    the Byrd Scholarships, consistent with the Clinton Administration's
    goals?
        Answer. The Administration believes that students should be
    recognized and rewarded for their academic achievement by giving them
    tangible resources for postsecondary education. This is consistent with
    the intent of the Byrd program. The Administration is also requesting
    funds for the proposed Presidential Honors Scholarship program, which
    would also reward high academic achievement.
        Question. With increasing global competition, and a continuing need
    for innovative technological leadership, does the Administration
    believe the Byrd Scholarship program to be a wise investment for the
    Nation?
        Answer. The Administration believes that the Byrd Scholarship
    program is an important investment for the Nation. The Administration
    believes that it is important to encourage students to strive for
    academic excellence. Students need to develop more skills than ever in
    order to compete in the global economy and meet the challenges of the
    next century.
                           NONDEPARTMENTAL WITNESSES

    STATEMENT OF HON. BOB MILLER, GOVERNOR OF NEVADA,
                CARSON CITY, NV
        Senator Specter. I would like to call Gov. Bob Miller, Gov.
    George Voinovich, Dr. Bruce Perry, and Mr. Rob Reiner. This
    panel is a part of a series of events highlighting the
    importance of early childhood education, including a White
    House Conference on Early Child Development, which will be held
    tomorrow. Time magazine issued a special report on how a
    child's brain develops, and this week Newsweek published a
    special edition devoted to the first 3 years of life. All of
    these events are designed to get the word out to parents about
    the importance of early childhood education.
        Governor Miller and Governor Voinovich are cochairs of a
    bipartisan National Governors Association task force studying
    State and Federal policy options to strengthen programs and
    support for families with young children. They will outline
    what the task force is doing as well as activities being
    carried out in their respective States.
        Dr. Bruce Perry will tell the committee the outcomes of
    brain research and how early intervention can have a profound
    impact on the development of young children.
        And we are privileged to have Mr. Reiner here with us
    today, and he will discuss the public awareness campaign
    entitled ``I Am Your Child.'' Mr. Reiner is chairman and
    campaign founder and he, along with his wife, Michele Singer
    Reiner, have produced a prime time television special designed
    to bring public attention to the importance of early childhood
    experiences. This special will air on April 28, this month, on
    ABC TV.
        We turn now to the distinguished Chairman of the National
    Governors Association, Gov. Bob Miller. A former Lieutenant
    Governor of Nevada, Governor Miller assumed the Governor's
    office in 1989 fulfilling the term left by Gov. Richard Bryan
    who joined us here in the Senate. Governor Miller and Governor
    Voinovich serve as cochairs of a bipartisan National Governors
    Association task force studying State and Federal policy
    options to strengthen programs and support for families with
    young children.
        If Senator Reid would care to give a special word of
    introduction, we would be delighted to recognize him at this
    time.
        Senator Reid. Thank you very much, Mr. Chairman.
        Governor Miller has a unique career. He will be Governor
    longer than anyone in the history of the State of Nevada. He
    will be Governor for 10 years. That is a result of Senator
    Bryan leaving in midterm. We have had for 25 years or more term
    limits in the State of Nevada, but every day that goes by, he
    breaks the record for longevity as a Governor.
        As you indicated, he was Lieutenant Governor. He is the
    only person in the history of the State of Nevada to be
    reelected district attorney of Clark County. That is where Las
    Vegas is.
        Senator Specter. So, he once had a really important job.
    [Laughter.]
        Senator Reid. He has been a judge. He has been a
    prosecutor. He is really one of Nevada's finest, and I am very
    proud to have him represent not only the State of Nevada, but
    the National Governors Conference today.
        Senator Specter. Well, we welcome you here, Governor
    Miller. The floor is yours. We look forward to your comments.

                      summary statement of hon. bob miller

        Governor Miller. Thank you, Mr. Chairman and Senator Harkin
    and other distinguished members of the subcommittee. I am
    representing the State of Nevada in my role as Governor of
    Nevada, and maybe some components of what I say are not shared
    unanimously by all the National Governor Association members.
    But I am honored and happy to be able to be here on a matter
    that concerns our very young children, especially the ages of 0
    to 3.
        Tomorrow the President and Mrs. Clinton will be hosting the
    first White House Conference on Early Childhood Development and
    Early Learning. This conference may be one of the most
    important meetings in recent memory.
        This meeting of scientific experts, one of whom at least is
    with us on this panel, policymakers, and other professionals
    will bring to light critical research on how babies and very
    young children learn and grow and how the human brain develops
    in healthy, productive environments.
        Conversely, the conference will also show how medical
    science has recently proved that a negative environment
    actually hinders brain development during the critical first 3
    years of life, and this results in a child losing his or her
    opportunity to thrive, to learn, and to grow to be happy and
    healthy.
        I believe we as leaders have a duty as policymakers, as
    protectors of America's children, to take heed of the latest
    research about early childhood brain development. We have the
    duty to act on this research and a duty to do all that we can
    to enable every child to receive the nurturing and positive
    stimuli he or she must experience from the first days of life
    through the third year.
        The Carnegie Foundation in New York was one of the first to
    tell us a comprehensive story on early childhood development,
    releasing a breakthrough study in 1994 which documented the
    compelling body of literature on young children's emotional,
    social, physical, intellectual, and brain development. It
    concluded that how children function from the preschool years
    all the way through adolescents and even adulthood hinges in
    large part on their experiences before the age of 3. This is a
    critical time, and the amazing physical developments that occur
    in the brain happen only once during those years.
        Today's medical technology dramatically illustrates how the
    growth of a child's brain will flourish in a healthy
    environment or how a child's brain will be stunted in a
    deprived or abusive environment. I am told by experts that even
    a short period of abuse during a young child's life will
    require hundreds of thousands of hours of remediation later in
    that same child's life, and if a child is deprived of a
    healthy, secure, and nurturing environment during his 3-year
    window of brain development, then the negative consequences may
    very well last a lifetime.
        But if we assure a healthy, stimulating, and caring
    environment, we can expect positive results for that child's
    entire life. There is no second chance. What is missed in the
    first 3 years is very, very difficult and costly to make up
    later on.
        These discoveries are so compelling that through Mr.
    Reiner's efforts that ABC Network will devote a week of
    programming to the subject and will begin at the end of this
    month--and that is virtually unprecedented. The ``Today Show,''
    ``Good Morning America,'' Newsweek, Time magazine, and most
    importantly the special which I will leave to Mr. Reiner's
    description I think are almost unprecedented in the coverage on
    a single issue in the history of this country by the Nation's
    media.
        This type of intense focus on America's young children is
    vitally important to the future of the Nation. Here are some
    statistics that help define the issues facing us.
        Between 1979 and 1994 the number of children under age 6 in
    poverty grew from 3.5 to 6.1 million. During the same period,
    the percentage of young children living in poverty rose from 18
    to 25 percent. Even more striking is nearly one-half of all of
    our children under age 6 live in poverty or borderline poverty.
        More than their poverty, these children often have no
    health care, sometimes go to bed hungry, are more likely to
    come from single parent households, some are on welfare, often
    their parents are poorly educated. They are more prone to child
    abuse and neglect, and they have limited prospects for
    education or employment.
        We are faced with a stark scenario of contrasts across the
    land. Many of our children do benefit from a positive
    environment that stimulates learning and healthy emotional
    development. Their future is bright. They are poised for life's
    successes.
        But an alarming number of children, due to a variety of
    negative factors, do not share in those happy prospects. For
    them the first 3 years of life will start a pattern of
    difficulty and disadvantage, and they are poised to fail.
        My wife and I have found watching and raising each one of
    our three children exhilarating, as I am sure all of you have,
    and as a parent, we all know those experiences, both good and
    bad. We were fortunate to have a supporting network of friends
    and relatives nearby. Not everyone is so fortunate in this day
    and age.
        As a policymaker, I have the opportunity to create, promote
    policies and programs that can help parents and care givers
    when they need it most, and there has been a great deal of
    debate about what is the role of government. Well, let me share
    with you my beliefs.
        We can all agree that raising a child is the responsibility
    of the parents or primary care giver. However, I think we can
    also agree that when families and communities are unable to
    meet those needs, government does have a role to play. Simply
    put, government should not take the place of a family or a
    community, but it can stabilize the environment in which
    children are being raised and it can empower families. It can
    lend a helping hand.
        As people elected to provide leadership, I think we can
    work together to determine how and when government should be
    involved and we should decide it together. Local government and
    civic leaders also need to be part of this dialog. We should
    work collectively to identify public/private partnerships and
    innovative financing structures and should allow flexibility
    for creativity to help design the services that are needed most
    and tailored to specific needs of the community.
        In our State, the 35-percent increase in Federal funding
    has resulted in a 91-percent increase in State funding. I have
    outlined a program in our State called family to family for the
    next 2 years which will be optional for all parents. An
    overwhelming majority we believe from recent research will
    participate--some 87 percent, in a poll we put out recently
    have indicated they would like to--in which they will receive
    some consultation both in hospitals and in their neighborhoods
    on a voluntary basis. No eligibility or means test. If you have
    a newborn, you qualify. The intent is to concentrate on baby
    wellness and to make sure parents are fully informed about the
    importance of a child's early years.
        Programs like that exist in Vermont, Hawaii, Minnesota,
    Kansas, and others, and many other States are following suit
    after the proposals that we heard from Mr. Reiner and Dr. Perry
    and others at our winter meeting. In Hawaii, those evidences
    are very strong, as they were in Vermont. In Hawaii, the
    incidence of repeat child abuse dropped from 62 to 3.3 percent.
    In Vermont, 82 percent of families with newborns participated
    and also a dramatic decrease in child abuse and neglect, as
    well as higher immunization levels rose dramatically.

                               prepared statement

        I think that is what it is all about. What can we as
    government do to work together with the private sector to work
    together with families and with hospitals in ensuring that each
    child has an equal opportunity to grow and develop in a healthy
    and nurturing environment.
        I appreciate your time and attention.
        [The statement follows:]

                     Prepared Statement of Gov. Bob Miller

        Senator Specter, Senator Harkin, distinguished members of
    this subcommittee. I am Governor Bob Miller of Nevada and
    Chairman of the National Governors' Association. As I present
    this testimony, I am representing the State of Nevada and not
    the National Governors' Association. I am honored and happy to
    be here today to discuss a matter of grave importance to my
    state and to the nation. The matter concerns our very young
    children, especially during the ages of zero to three.
        Tomorrow, the President and Mrs. Clinton will be hosting
    the first White House Conference on Early Childhood Development
    and Early Learning. This conference may be one of the most
    important meetings in recent memory. This meeting of scientific
    experts, policymakers and other professionals will bring to
    light critical research on how babies and very young children
    learn and grow, and how the human brain develops in healthy,
    productive environments. Conversely, the Conference will also
    show how medical science has recently proved that a negative
    environment actually hinders brain development during the
    critical first three years of life. This results in a child
    losing his or her opportunity to thrive, to learn, and to grow
    up happy and healthy.
        We have a duty as leaders, as policymakers, as protectors
    of America's children, to take heed of the latest research
    about early childhood brain development. We have the duty to
    act on this research. We have the duty to do all we can to
    enable every child to receive the nurturing and positive
    stimuli he or she must experience from the first days of life
    to age three.
        The Carnegie Foundation in New York was one of the first to
    tell a comprehensive story on early childhood development. It
    released a breakthrough study in 1994 which documented the
    compelling body of literature on young children's emotional,
    social, physical, intellectual, and brain development. The
    study concluded that how children function from the preschool
    years all the way through adolescence, and even adulthood,
    hinges in large part on their experiences before the age of
    three.
        This is a critical time. The amazing physical developments
    that occur in the brain happen only once, from age zero to
    three.
        Today's medical technology dramatically illustrates how the
    growth of a child's brain will flourish in a healthy
    environment * * * or how the child's brain will be stunted in a
    deprived or abusive environment. I am told by experts that even
    a short period of abuse during a young child's life will
    require hundreds or thousands of hours of remediation later in
    that child's life.
        If a child is deprived of a healthy, secure, and nurturing
    environment during this three-year window of brain development,
    then the negative consequences may well last a lifetime. But if
    we assure a healthy, stimulating, and caring environment we can
    expect positive results for that child's entire life. There is
    no second chance. What is missed in the first 3 years is very,
    very difficult--and costly--to make up later on.
        These discoveries are so compelling that the ABC Network
    will devote a week of programming to the subject. This coverage
    will begin at the end of this month, I'm told this level of
    coverage is virtually unprecedented in TV history.
        This type of intense focus on America's young children is
    vitally important to the future of the nation. Here are some
    statistics that help define the issues facing us.
        Between 1979 and 1994, the number of children under age 6
    in poverty grew from 3.5 million to 6.1 million. During this
    same period, the percentage of young children living in poverty
    rose from 18 percent to 25 percent. Even more striking is that
    nearly one-half of all our children under age 6 live in poverty
    or borderline poverty.
        More than their poverty, these children often have no
    health care; they sometimes go to bed hungry; they are more
    likely to come from single-parent households; some are on
    welfare; often, their parents are poorly educated; they are
    more prone to child abuse and neglect; and they have limited
    prospects for education or employment.
        We are faced with a stark scenario of contrasts across the
    land. Many of our children do benefit from a positive
    environment that stimulates learning and healthy emotional
    development. Their future is bright. They are poised for life
    success.
        But an alarming number of our children, due to a variety of
    negative factors, do not share in those happy prospects. For
    them, the first 3 years of life will start a pattern of
    difficulty and disadvantage. They are poised to fail.
        As policymakers, we can not tolerate this situation. We
    must face the challenge of helping every family meet the needs
    of every child during the first 3 years of life.
        In Nevada this year, I have proposed a program called
    Family-to-Family Connection that addresses early childhood
    development. The program is optional for all mothers and
    fathers with a newborn baby. Our research shows that the
    overwhelming majority of parents, from all stations in life,
    are interested in participating in the Family-to-Family
    Connection.
        It provides hospital, home and neighborhood visits for
    every family who wants to participate.
        There are no eligibility resections or means tests. If you
    have a newborn, you qualify. The program is largely
    administered by communities through nonprofit organizations,
    one-stop family resource centers, the religious community and
    other local groups.
        The intent of the Family-to-Family Connection is to
    concentrate on baby wellness, and to make sure parents are
    fully informed about the importance of a child's early years.
    The program strives to assure that all participating parents
    will have ready access to the information they need. It also
    connects families with essential services in the community they
    might need to succeed as parents.
        Programs like Family-to-Family Connection have started in
    states such as Vermont, Hawaii, Minnesota, Kansas, and others.
    The results are dramatically successful. In Vermont, 82 percent
    of families with newborns participated last year. And their
    program has resulted in reduced occurrence of child abuse and
    neglect, and higher immunization levels.
        In Hawaii, similar positive results are evident. The
    incidence of repeat child abuse dropped from 62 percent to 3.3
    percent. In Nevada, we hope to do as well. Family-to-Family
    Connection and these other programs are not ends, but
    beginnings.
        And maybe that's been our problem all along: we don't know
    where to begin. I am here today, Senators, to say that the
    beginning must be now. We have to draw a line in the sand and
    say this next generation of children will not suffer as past
    generations have suffered
        We have to fight back against the conditions that undermine
    the ability of families to provide the healthy environment each
    child must have.
        Once again, let me say how honored I've been to speak here
    today. I thank you for the committee's generous time, and I
    will answer any questions that you might have.

                                   goals 2000

        Senator Reid. Mr. Chairman, I have to go to a meeting in
    the Capitol. Could I just say a brief word? I know it is out of
    turn.
        Senator Specter. Go ahead, Senator Reid.
        Senator Reid. I want to also indicate for the record that
    not only has the Governor been involved in education matters,
    but his wife, who has been the chairperson of Goals 2000 in the
    State of Nevada, is responsible for having a scientific advisor
    now for the State of Nevada.
        I had the good fortune to sit through one of our Democratic
    conferences and hear Mr. Reiner speak, and it was very
    stimulating.
        Thank you very much.
        Senator Specter. Thank you very much, Senator Reid.
    STATEMENT OF HON. GEORGE VOINOVICH, GOVERNOR OF OHIO,
                COLUMBUS, OH
        Senator Specter. We now turn to the distinguished Governor
    of Ohio, Gov. George Voinovich, Vice Chairman of the National
    Governors Association, who will serve as the Chairman beginning
    in 1998. The Governor is a former Ohio State legislator,
    assistant attorney general, and county commissioner. He was
    elected Governor of Ohio in 1990 after serving 10 years as the
    mayor of Cleveland.
        The improvement of education is the top priority for
    Governor Voinovich. The Schoolnet Program he initiated is now
    bringing 21st century computer technology into all Ohio
    classrooms.
        Thank you for joining us, Governor Voinovich. The floor is
    yours.

                   summary statement of hon. george voinovich

        Governor Voinovich. Thank you, Chairman Specter and Senator
    Harkin, for the opportunity to testify before you today.
        As Governor of Ohio and Vice Chairman of the National
    Governors Association, it is exciting to be part of the I Am
    Your Child campaign and I would like to congratulate Mr. Reiner
    and his team for using television to bring to the American
    people the importance of 0 to 3 in this country, which I think
    is long overdue.
        I am proud that Ohio is often recognized for our efforts to
    meet the first national education goal of having all children
    enter school ready to learn. I shared that vision in my first
    state of the state address back in 1991 when I said our aim is
    to make an unprecedented to one priority that I believe ranks
    above all others, the health and education of our children.
        The only way to do it is to pick one generation of
    children, draw a line in the sand, and say to all, this is
    where it stops. I am grateful that in partnership with the Ohio
    General Assembly--and they have been very, very cooperative on
    a bipartisan basis--and through dedicated efforts of many
    citizens and organizations, we have turned this vision into a
    measurable goal.
        We have also worked to expand the definition of education
    in Ohio to lifelong learning that starts at conception and
    recognizes what doctors and researchers have said about the
    importance of positive early childhood learning experiences.
        It is discouraging to me that too often many of the
    educators in traditional education fields fail to see the
    learning value of childhood programs and so often view them as
    strictly competitive with scarce funds that are available for
    education.
        As Congress contemplates the importance of early childhood
    development, I hope you will follow Ohio's fiscal investment
    strategy. Since taking office in 1991, our biennial budgets
    have grown at the lowest rate in 40 years. We have a good
    budget stabilization fund, and we continue to look at programs
    in State government to ensure they are necessary and they are
    cost effective.
        But within that fiscally conservative program, we have
    prioritized programs benefiting family and children. For
    example, between 1991 and 1998, which will be the years I am
    Governor, we will have increased funding for children and
    families approximately 50 percent while inflation has gone up
    during that same period about 27 percent.
        Today, our State leads the Nation in the percentage of
    eligible children served and State investment in Head Start,
    and I just looked at the numbers. In 1990-91, we spent $18.9
    million on Head Start. Today, we spend $181 million. We had
    6,300 kids in Head Start. Today, we have 67,750 kids, and when
    you combine our public preschool, special education, 83 percent
    of the eligible kids in our State whose parents want them in
    the program are there, and by the end of 1998, all of them will
    have an opportunity to participate in the Head Start Program.
        We have also done something else that you would be
    interested in and that is we have funded a program called Early
    Start, which now serves about 4,000 infants and toddlers. In
    fact, thanks to the flexibility granted to Ohio by the
    temporary assistance to needy families welfare reform package,
    my administration is working with our State legislature to
    invest $6 million of TANF funds over the next 2 years to
    provide Early Start for an additional 2,500 young families on
    public assistance. Since families with children under age 1 are
    going to be exempt from the work requirements that you have in
    the legislation, we want to focus on their children's early
    development, and that emphasizes the importance of quality
    child care. In pilot counties, families will have access to
    services ranging from parent education to respite care to
    speech therapy and counseling. Just as with our non-TANF
    clients, home visitors will help each family meet its parenting
    goals.
        I just want to say to you that the flexibility that you
    have given us in that block grant has enabled us to do some
    things that we would not have been able to do under the
    traditional categorical programs.
        Senator Specter. Governor Voinovich, may I ask you to
    summarize? I have just been informed that we are going to be
    voting within the next 10 minutes and I would like to reach
    both of our witnesses before we conclude.
        Governor Voinovich. I think in a nutshell what I would like
    to say to you is, in terms of national policy, I think
    education is primarily the responsibility of the States.
        I think that if Congress is going to give consideration to
    doing something in this area on a pilot basis or otherwise,
    that what you ought to do is look at the programs that you are
    already spending money on and see if there is not some way that
    maybe you could reprioritize some of the money that you are
    spending and putting it into an area that I think is going to
    give you a larger return on your investment.

                               prepared statement

        And last but not least, I want to tell you something. You
    spend a lot of money on the Head Start Program. It has been in
    there for 26 years, it is a great program and you ought to
    think about trying to encourage States either through a carrot
    or through a stick to get more involved in this Head Start
    Program which I think is so important to this country,
    particularly with our children at risk.
        Senator Specter. Thank you very much, Governor.
        This committee concurs with you. We have allocated
    resources to prove it.
        [The statement follows:]

                 Prepared Statement of Gov. George V. Voinovich

        Thank you Chairman Specter and Senator Harkin for the
    opportunity to testify before you today.
        As the Governor of Ohio and Vice-Chairman of the National
    Governors' Association, it's exciting to be part of the ``I Am
    Your Child'' campaign.
        From the beginning of my administration, we've made the
    education and well-being of our children our highest priority.
    I'm proud that Ohio is often recognized for our efforts to meet
    the first national education goal of having all children enter
    school ``ready to learn.''
        I laid out our vision in my first State of the State
    Address in 1991 when I said:
        ``Our aim is to make an unprecedented commitment to one
    priority that I believe ranks above all others * * * the health
    and education of our children.
        The only way to do it is to pick one generation of
    children--draw a line in the sand--and say to all: This is
    where it stops.''
        I'm grateful that in partnership with the Ohio General
    Assembly--and through the dedicated efforts of many citizens
    and organizations--we've turned this vision into a measurable
    goal.
        We've also worked to expand the parameter of an education
    beyond K-12 to ``life-long learning'' which includes what
    doctors and researchers have said about the importance of
    positive early childhood learning experiences.
        It is discouraging that so many professionals in
    traditional education fields fail to see the learning value of
    early childhood programs and view them strictly as competition
    for scarce funds.
        As Congress contemplates the importance of early childhood
    development, I hope you will follow Ohio's fiscal investment
    strategy.
        Since taking office in 1991, Ohio's biennial budgets have
    grown at the slowest rate in over 30 years. Within this low
    growth, the state has built a responsible rainy day fund. State
    funded programs have been constantly reviewed to ensure that
    they are necessary and cost-effective.
        Within this fiscally conservative framework, Ohio has
    prioritized programs benefiting families and children. Between
    fiscal years 1991 and 1998, our spending on children and
    education is $5 billion higher--that's a 45.5 percent increase
    at a time when inflation equaled 26.4 percent.
        Today, Ohio leads the nation in the percentage of eligible
    children served--and state investment in--Head Start. (54,645
    or 75 percent, $145.6 million expenditure in fiscal years 1996-
    97.)
        Ohio is also becoming a leader in state-funded Early Start
    which now serves 4,000 infants and toddlers. In fact, thanks to
    the flexibility granted Ohio by the TANF (Temporary Assistance
    to Needy Families) block grant, my administration is working
    with our state legislature to invest $6 million in TANF funding
    over the next 2 years to provide Early Start for an additional
    2,500 young children in families on public assistance.
        Since families with children under age 1 will be exempt
    from work requirements, we want them to focus on their
    children's early development.
        In pilot countries, families will have access to services
    ranging from parent education to respite care to speech therapy
    and counseling. Just as with our non-TANF clients, home
    visitors will help each family meet its parenting goals.
        Without the flexibility of the TANF block grant, Ohio
    wouldn't have been able to fund Early Start for the families of
    these infants and toddlers.
        Ohio's Help Me Grow program demonstrates the power of the
    public/private partnership. With my wife, Janet, as spokesman,
    corporate partners combine their financial and creative
    resources with the expertise of the health care community to
    support a statewide health promotion initiative designed to
    encourage prenatal care and preventive health care for babies
    and toddlers.
        A free wellness guide provides families with valuable
    parenting information and discount coupons redeemable for a
    variety of goods and services following health care visits.
        Since 1995, Ohio's distributed 633,000 free wellness
    guides. Our Help Me Grow helpline (1-800-755-GROW) has answered
    117,000 telephone calls, providing information ranging from
    health care to family-related support services, adoption and
    foster care. As part of our outreach, Help Me Grow has handed
    out 7,000 P.J. Huggabee bears to children in foster care.
        A key piece of our public/private partnership is that we
    measure our impact. We need to be able to show our partners
    that Help Me Grow is making a measurable difference. As a
    result, we can prove that it is * * *.
        Ninety-three percent of all women receiving a wellness
    guide reported they began their prenatal care within the
    crucial first trimester * * * this exceeds the state average by
    10 percent.
        Ohio's rate of fully immunized 2-year-olds is up from 66
    percent when Help Me Grow started, to 71 percent today.
        Ohio's also reduced the number of babies born with chemical
    dependence. (1,291 babies since fiscal year 1993, $59 million
    saved.) And, our overall infant mortality rate is down.
        What I've just outlined are programs and partnerships which
    we believe qualify as national best practices. Throughout our
    50 states we can find numerous other quality efforts for
    children. The goal is to foster more * * *.
        When I become NGA Chairman next July, I intend to build
    upon the leadership of Governor Miller. I've already indicated
    to him and Executive Director Ray Scheppach that I will
    continue our current efforts under the banner of ``Zero to
    Three: Our Future.'' One of our first efforts will be to host a
    national conference to share the step-by-step best practice
    programs already achieving results.
        In the meantime, the NGA's Leadership Group on Children
    will continue to educate us all about the need for early
    childhood development while serving as a powerful catalyst for
    new partnerships for young children. The NGA's work also
    reinforces the need to baseline and benchmark programs so we
    can monitor our efforts.
        In closing, I want to reiterate today that the efforts we
    support for early childhood development address one of the two
    major deficits facing the nation today.
        The ``I Am Your Child'' effort focuses our national
    attention on what I call the ``human deficit.'' I am a firm
    believer that prioritizing early childhood development will
    help our states address the ongoing problems of too many high
    school dropouts, dependence on public assistance and ever
    burgeoning prison inmate populations.
        However, while we discuss these problems we cannot overlook
    our first national priority * * * the need to reduce the
    federal budget deficit. The fact is, if we don't get this under
    control, there won't be anything left for anyone.
        We have a brand-new grandchild, Mary Faith Voinovich. This
    country's gift to Mary Faith was a bill for $187,000. This is
    the interest cost she will have to pay in taxes on the federal
    deficit.
        While we deal with the human deficit, we must deal with the
    federal deficit. Just as we did in Ohio, we need to slow the
    growth in spending in order to free up the funds to invest in
    programs which give us the best return.
        I firmly believe this can be accomplished. The federal
    government now funds more than 600 separate categorical
    programs, many of which serve the same client base. This is not
    effective. Every functional categorical area of federal aid
    should be explored to find more cohesive and efficient program
    structures.
        As incoming Chair of the NGA, I intend to devote our
    association's resources to undertaking a thorough and
    comprehensive review of these programs.
        We would like to work with the Congress and the
    Administration to rationalize and consolidate these programs so
    that we increase the efficiency of government programs, devolve
    responsibilities to the states, protect long-term investments,
    and ensure that the benefits of federal programs outweigh the
    costs.
        Ultimately, I believe this review would facilitate a re-
    ordering of priorities which would benefit our nation's
    children.
        Again, I thank you for the opportunity to share my thoughts
    with you today. I have every confidence that by all of us
    working together we can ensure that our nation's young children
    receive everything they need to develop to their God-given
    potential. Thank you.
    STATEMENT OF DR. BRUCE PERRY, PROFESSOR OF CHILD
                PSYCHIATRY AND VICE CHAIRMAN FOR RESEARCH,
                DEPARTMENT OF PSYCHIATRY, BAYLOR SCHOOL OF
                MEDICINE, HOUSTON, TX
        Senator Specter. I would like to turn now to Dr. Bruce
    Perry, senior fellow and vice chairman for research in the
    Department of Psychiatry and Behavioral Sciences at Baylor
    College of Medicine, Houston, TX. Welcome, Dr. Perry, and the
    floor is yours. To the extent that you could abbreviate your
    statement, we would appreciate it.
        Dr. Perry. Thank you very much. I appreciate the
    opportunity to be here. I will try in a few minutes to try to
    help you understand, if I can, this incredible sense of
    frustration I feel by knowing things that I think if you knew,
    you would change the way you do things.
        That is the wonderful thing about this public engagement
    campaign is that there are bodies of information that relate to
    brain development and child development that literally have the
    capacity to transform our culture, and they have been out there
    for some time.
        Through the efforts of Rob and Michele and the team they
    put together, they have put people in the same room that speak
    different languages. They come from different disciplines, but
    they all see the same thing, whether they are cops, social
    workers, child development specialists, lawyers. They all see
    that these children that are costing us so much and these
    children who we do not provide opportunities so that they can
    realize their potential come from environments that are devoid
    of certain characteristics.
        Now, obviously there are so many aspects of this that need
    to be addressed, and I will let Rob talk about some of those
    things.
        But what I would like to say is that this is a Government
    place and we are here talking about this, but I think it is
    crucially important that everybody understands that these
    problems will never be solved by Government. These problems
    will never be solved by families alone. These problems will
    never be solved by business. These problems will never be
    solved by any segment of our society working alone, and the
    only way that things will change, the only way that we can
    create these environments that we now know can develop a
    healthy, flexible brain is by creating novel, cross-
    institutional, atypical, synthetic solutions.
        I think there are places where that is taking place. In
    Houston, for example, the Civitas initiative is funding and
    leading a novel public/private partnership that is focusing on
    high risk kids from 0 to 6. It has already had tremendous
    impact on the dollars that are spent and where we put these
    abused and neglected kids, the services we provide for them,
    and it is making a difference. There are many, many other
    examples of that going on across the country.
        I will close with one request, that you take time, and I
    know many of you have, to learn about the brain. It seems like
    that is a silly thing for Senators to learn about, but the
    reality is the brain is the organ that allows us to think, to
    act, to believe, to hate, everything we do. The fact that you
    can believe in a democracy, the fact that you can understand
    anything is related to how your brain develops.
        And it does not develop in a magical way. It just does not
    pop up and happen that way. The brain develops because there
    have been specific, patterned consistent experiences that are
    characterized by nurturing, predictability, structure, and the
    crucial element of that is that 85 percent of this foundational
    capacity to think, to act, to be a citizen, to pay taxes, to
    have a job occurs in the first 3 years of life.
        When you miss that window of opportunity, if we continue to
    have this mismatch between the potential for when the brain is
    changeable and when we put our money into programs, we will
    continue to have problems meeting the potential of our culture.
        And I thank you for that and I pass it on to Rob.
        Senator Specter. Thank you very much, Dr. Perry.
    STATEMENT OF ROBERT REINER, CASTLE ROCK ENTERTAINMENT,
                BEVERLY HILLS, CA
        Senator Specter. We now turn to Mr. Rob Reiner, chair and
    founder of the I Am Your Child campaign, intended to increase
    public awareness of the importance of early childhood
    development. An Emmy Award winner for his role in the landmark
    television series, ``All in the Family,'' he is one of the film
    industries top directors with such credits as ``Stand by Me,''
    ``The Princess Bride,'' ``When Harry Met Sally,'' ``Misery,''
    ``A Few Good Men,'' ``The American President,'' and ``Ghosts of
    Mississippi.'' It is a privilege for us to welcome you here,
    Mr. Reiner. The floor is yours.
        Mr. Reiner. Thank you very much, Chairman Specter, and
    Senator Harkin for allowing me to come here.
        I had a statement prepared but I am not going to issue it
    now because I know we are short for time.
        I feel bad that Senator Byrd is not with us at this moment
    because he asked a very important question that we have the
    answer to. He was talking to Secretary Riley and he said:

        With all of the years that he has spent in the U.S.
    Senate--he has been here 45 years and he has voted for every
    appropriation for every educational bill that has come down--
    why have we not produced better students.

        Well, we now know the answer to that and we are fools,
    absolute fools, if we do not invest in this answer.
        The answer is very clear. Science now points the way and
    tells us that it is in the first 3 years of life. What happens
    to a child, what a child experiences in the first 3 years of
    life, lays the foundation for who that child will be, how that
    child will function later on in school and later in life, and
    whether or not that child will be able to integrate positively
    or negatively into society. We know this. We have the answers.
    The answers are here. We just have to act on how to implement
    those answers. We know what to do. It is a question of how to
    do it.
        I feel bad that there is not one single Republican member
    of this committee sitting here today. I know the chairman is
    here. You have to be here, sir, and I am glad you are here.
    [Laughter.]
        I am glad you are here and I know these other gentlemen
    will get this information at some point, but whether they do or
    not, whether what I am saying here gets past this committee or
    not, this will happen. This will happen because the public will
    will make it happen.
        We must address the first 3 years of life if we want to
    impact crime, teen pregnancy, drug abuse, child abuse, welfare,
    homelessness, and every other societal ill. If we do not, we
    are fools.
        Senator Byrd also said we have to applaud academics. Well,
    there is a man sitting at the end of this table who is a
    professor of psychiatry, who is a neurobiologist at Baylor
    University. This man is telling us something, along with many
    other people who are going to be represented in a report that
    is going to be released at the White House tomorrow called:
    ``Rethinking the Brain.'' That tells us very, very specifically
    what happens in those first 3 years.
        We have done a lot now. We have all sat in these rooms. I
    have been civically minded and politically active my entire
    life. I have sat in rooms like this and I have sat in rooms
    across the country with groups of people trying to figure out
    how to solve problems. We have been beating our heads against
    the wall for as many years as I can remember.
        We always come to the same answer, and every person in this
    room knows it. Education is the key. We always say that, but
    then what does that mean? How do you educate? Who do you
    educate? What form does that education take?
        Well, science now tells us where to look. It tells us that
    the education has to happen in the first 3 years, and that does
    not mean reading Tolstoy to a 2-year-old, and it does not mean
    issuing flash cards. It means providing a nurturing environment
    for a child from the time they are born to 3 years old.
        And that is what the I Am Your Child campaign is all about.
    It is about getting that information out to the public, making
    the public aware of it.
        I can guarantee you once everybody understands this, we can
    all sit here and knowing what we know now, we are not going to
    defund anything. There are programs that we need and they are
    important, but if we were to take Head Start, which is a good
    program that has been around for 32 years, has been funded at
    the level of $4 billion a year, and we take Early Head Start,
    which is relatively new, that I think is funded at $150 million
    a year--we are trying to ramp it up hopefully with some
    legislation to double that. Knowing what we know now, we would
    be fools to say that we would reverse that. If we had to wipe
    the slate clean and start from the beginning, we would put the
    $4 billion in the first 3 years and the $150 million later.
        Obviously, we are not going to do that, but what I am
    trying to impress on everybody is how critical those first 3
    years are. And we are not saying to the Federal Government, you
    are the answer. We are not saying the Federal Government has to
    issue a one-size-fits-all program, but we are saying that the
    Federal Government has to play a part. We see it as a
    partnership. As Governor Miller points out, it is a partnership
    between the Federal Government, State governments, local
    communities, and the business community.
        We are going to host a CEO summit in the fall with Kaiser
    Permanente. We are going to bring CEO's from all over the
    country to talk about what can be done in the first 3 years of
    life. There are a lot of other activities that we have planned
    with our campaign.
        But we have to start rethinking, we have to start
    reprioritizing and looking at problem solving through the prism
    of 0 to 3. We have to understand that there is a direct nexus
    between what happens to a child in the first 3 years and social
    ills that come down the road.

                               prepared statement

        We are also having the Rand Corp., do a study, a cost-
    benefit study, on the intervention programs that are working,
    and that study will be made available in the early part of the
    summer. The preliminary findings are very, very encouraging.
    What it says basically is we can pay some money now and save a
    lot of money later or not pay the money now and it costs us a
    lot of money later. It is very, very clear. Do we want to spend
    the money now and reduce people's taxes and have tax infusion
    into the economy, or do we want to skip these first 3 years and
    build more prisons and have more crime and more teen pregnancy
    and more child abuse----
        Senator Specter. Mr. Reiner, we are now 4 minutes into the
    vote.
        Mr. Reiner. That is the end of my statement. Thank you very
    much. [Laughter.]
        [The statement follows:]

                      Prepared Statement of Robert Reiner

        I want to thank Chairman Specter and Senator Harkin for
    inviting me to appear before this committee this afternoon.
        I'm here as a representative of ``I Am Your Child,'' a
    national awareness and engagement campaign designed to shed
    light on the vital importance of the first 3 years of life.
        With the startling new research in brain development,
    science now clearly tells us that what a child is physically,
    emotionally, and intellectually exposed to from the prenatal
    period through age three has a far-reaching effect on how a
    child's brain organizes itself. And since we now know that 90
    percent of a person's brain growth and development occurs in
    the first 3 years, how a child's brain organizes itself in
    those critical early years will have a profound impact on what
    kind of an adult he or she will turn out to be. Whether he or
    she will become either a toxic or nontoxic member of society is
    in large part determined by a child's experiences in the first
    3 years.
        The implications of this with respect to public policy are
    eminently clear. If we want to make a truly meaningful impact
    on crime, teen pregnancy, drug abuse, child abuse, welfare, and
    a variety of other societal ills, we must focus on the first 3
    years of life. If we truly want every child to enter school
    with a readiness to learn, we must provide him or her with the
    proper foundation. How do we do this?
        The implications of science are clear, but what are the
    applications? First, we must recognize that in order for each
    child to reach his of her full potential, children and their
    parents must have access to health care, quality child care,
    parenting services, and intervention programs when necessary.
        As far as parenting services and intervention programs are
    concerned, there are a number of approaches that have been
    proven effective. We have commissioned the Rand Corporation to
    do a cost-benefit analysis of these programs, and the results
    are more than encouraging. We can provide the committee with
    some preliminary findings of the Rand study if requested. The
    full report will be made public this summer.
        We've all sat in rooms like this trying to find ways to
    solve society's problems. Science now clearly shows us what
    we've suspected all along: If we are truly interested in making
    a significant difference, we must attack the problems at the
    roots. The first years last forever.

                                good health care

        Senator Specter. Let us see if we have time for one
    question from each member and a brief answer.
        Mr. Reiner, could you give us some insight as to what ought
    to be done during 0 to 3?
        Mr. Reiner. OK. We look at it as a four-pronged approach.
    First we need good health care. There are too many children
    without good health care. If they are not taken care of
    physically, they are not going to develop properly. That we
    know.
        The second is child care. That has been touched on. Senator
    Kohl talked about child care. We need good quality child care
    to help empower parents to do the right things for their
    children the first 3 years.
        The third thing we need is good parenting programs and
    information for parents to help them be better parents.
        And the fourth thing are intervention programs when
    necessary for children at risk. We can identify. We know what
    those programs are. You have all done the studies and we can
    identify and help you identify those programs.
        So, those are the four areas we need to provide every
    community.
        In the special that we are doing, I Am Your Child, we focus
    in on Hampton, VA, a community that was at risk that came
    together over this issue because they found it a way to lift
    the community socially and economically, and they have done a
    tremendous job. It will give you a blueprint of what we are
    talking about.
        Senator Specter. Senator Harkin.
        Senator Harkin. Thank you very much, Mr. Chairman.
        Again, I appreciate all your statements, Mr. Reiner and
    Governors, Dr. Perry.
        We live in the political world, the realm of the possible
    of what we can accomplish. I would like to ask you, Governor
    Voinovich. I am very encouraged by what you have done in the
    State of Ohio during your tenure as Governor.
        I said earlier that we have all I think as Republicans and
    Democrats accepted the separation that elementary and secondary
    education is the primary function in State and local
    communities and that is where local control ought to stay,
    right there.
        We have also accepted I think from both parties that the
    Federal Government has a very significant role in postsecondary
    education with Pell grants and guaranteed student loans and
    land grant colleges and everything else. We could debate how
    much, but basically politically we have agreed on that.
        Do you think it would be possible for us to have a
    bipartisan agreement that there is a proper role and a
    significant role for the Federal Government to play in early
    childhood education before they get to that elementary school
    which is primarily under local and State jurisdiction, in other
    words, looking at early childhood education from a Federal
    standpoint, as we look at postsecondary education from a
    Federal standpoint? Is that possible?
        We have made some inroads here, Head Start Programs, WIC
    Programs, part H for kids with disabilities, things like that.
    I am trying to think if we cannot get some kind of a national
    consensus politically among the two leading parties in this
    country. Do you think that would be possible? I do not know
    what you think of that.
        Governor Voinovich. What I think of it is that again you
    need to look at what you are doing. You have 600 categorical
    programs here that deal with the same people, and we always
    look at those programs in light of the budget crunch instead of
    looking at them without the framework of the budget. How can we
    do a better job of providing services to people in this
    country? I think that by doing that, you could find more money
    that you could invest in the kinds of things that I think are
    important in this Nation.
        But you got a real problem here. There are two problems in
    this country--big problems. One is the Federal deficit and the
    other is the human deficit. What I am saying is that at the
    time you want--we have got lots of things that need to be done,
    but if we keep going the way we are going, there will not be
    anything left for anybody. If you look at, for example, money
    for discretionary programs and the interest we are paying, it
    is disappearing.
        So, what I am saying is that we ought to sit down and
    figure out who is doing what, what resources we have, and I
    think picking up on Dr. Perry and I think on Rob, how do we
    galvanize the resources of our local communities, our States,
    the Federal Government, the private sector to figure out how we
    can come down and get this job done. That is where I come from.
        Senator Specter. One question, Senator Bumpers.
        Senator Bumpers. Dr. Perry, we have been told, since the
    memory of man runneth not, that how a child develops in the
    first 3 years, and how the child's brain develops depends on
    what kind of protein diet the child has, among other things.
    That is the reason we have the WIC Program, one of the most
    cost-effective programs that we have.
        Some of the things you are saying here are fairly new to me
    and I have been involved in childhood education since I was
    first elected Governor of my State. What you are saying I do
    not disagree with and I do not think anybody on this committee
    would, but there is a socioeconomic problem that almost has to
    precede this.
        When my daughter was 2 years old--she had a very ominous
    condition. We lived in a community of 1,200 people. I was the
    only lawyer in town, and by just outhouse luck, we wound up
    with her in the hands of the best pediatric neurosurgeon in the
    world, Boston Children's Hospital. Now she is a very
    successful, magnum cum laude lawyer.
        I can tell you that 99 percent--98 percent of the people in
    that community would have watched their child die, and it was
    pure luck that we did not.
        So, I agree with you as to how important it is to give
    these children this sort of thing--you know, my brother and
    sister are both rich Republicans. I am the only Democrat left
    in the family. [Laughter.]
        I keep reminding them that what we did that most children
    do not get a chance to do is to choose our parents well. I
    mean, we are doing the best we can to make people economically
    secure and give them better housing, better health care, all of
    those things. But it seems to me that that almost has to
    precede some of the ideas you've discussed. I do not care
    whether I make this vote or not. [Laughter.]
        Dr. Perry. We think about these things all the time, and
    what you are saying is absolutely critical to this whole
    process of understanding how we are going to live together now
    with these evolutions that are taking place in technology, in
    economics, and all kinds of things are changing in our world.
        I think that what we have to do is sit down and talk about
    what were the elements of living that way that created
    consistent predictable nurturing experiences, and are there any
    ways with the new changes in the way we live together, the fact
    that mom and dad are both working, the fact that there are
    socioeconomic pressures that take parents away from the ability
    to provide that kind of optimal experience sometimes, are there
    ways to bring in grandparents? Well, we do not live that way
    anymore. Are there ways to bring in the elderly? Are there ways
    to be creative about this? We literally need to think----
        Senator Specter. This concludes the hearing. Senator
    Bumpers is on his own.
        Dr. Perry. Sorry.
        Senator Specter. You go ahead, Dr. Perry. [Laughter.]
        Dr. Perry. I think we literally need to rethink a lot about
    the way we live together, about literally the recreation--we
    need to create spaces where people can be together. We have
    this tremendous I think destructive compartmentalization where
    the elderly are here and the infants are here and the work
    people go over here and education takes place here, here, here,
    and here so fifth grade kids do not see first graders and first
    graders do not hang out with babies. We really need to think
    about the way we live together.
        I think when we do that and when we begin to create--and I
    think one way that we can start to use this is I think that we
    need to think about some public spaces being redesigned and
    utilized in innovative ways like school-based clinics. You
    could also have school-based technology resources. You could
    have places for adult education in the public school settings.
    You could have an after-school program where the elderly could
    come and tutor at a school. You could do all kinds of things
    utilizing the resources we already have.
        But I really think what it requires is well-meaning people
    who are smart sitting down and being willing to be flexible and
    work together.
        Senator Bumpers. Gentlemen, thank you all very much. I am
    sorry we do not have more time.

                              subcommittee recess

        The subcommittee will stand in recess until 2 p.m.,
    Wednesday, June 11, when we will meet in SD-192 to hear
    testimony from Dr. Harold Varmus, Director, the National
    Institutes of Health.
        [Whereupon, at 4:07 p.m., Wednesday, April 16, the
    subcommittee was recessed, to reconvene at 2 p.m., Wednesday,
    June 11.]

      DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
              RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1998

                                  ----------

                            WEDNESDAY, JUNE 11, 1997

                                           U.S. Senate,
               Subcommittee of the Committee on Appropriations,
                                                        Washington, DC.
        The subcommittee met at 2 p.m., in room SD-138, Dirksen
    Senate Office Building, Hon. Arlen Specter (chairman)
    presiding.
        Present: Senators Specter, Cochran, Gorton, Bond, and
    Harkin.

                    DEPARTMENT OF HEALTH AND HUMAN SERVICES

                         National Institutes of Health

    STATEMENT OF DR. HAROLD VARMUS, DIRECTOR, NIH
    ACCOMPANIED BY:
            DR. RUTH KIRSCHSTEIN, DEPUTY DIRECTOR, NIH
            DR. RICHARD KLAUSNER, DIRECTOR, NATIONAL CANCER INSTITUTE
            DR. CLAUDE LENFANT, DIRECTOR, NATIONAL HEART, LUNG, AND BLOOD
                INSTITUTE
            DR. HAROLD SLAVKIN, DIRECTOR, NATIONAL INSTITUTE OF DENTAL
                RESEARCH
            DR. PHILLIP GORDEN, DIRECTOR, NATIONAL INSTITUTE OF DIABETES
                AND DIGESTIVE AND KIDNEY DISEASES
            DR. ZACH HALL, DIRECTOR, NATIONAL INSTITUTE OF NEUROLOGICAL
                DISORDERS AND STROKE
            DR. MARVIN CASSMAN, DIRECTOR, NATIONAL INSTITUTE OF GENERAL
                MEDICAL SCIENCES
            DR. DUANE F. ALEXANDER, DIRECTOR, NATIONAL INSTITUTE OF CHILD
                HEALTH AND HUMAN DEVELOPMENT
            DR. CARL KUPFER, DIRECTOR, NATIONAL EYE INSTITUTE
            DR. KENNETH OLDEN, DIRECTOR, NATIONAL INSTITUTE OF
                ENVIRONMENTAL HEALTH SCIENCES
            DR. RICHARD J. HODES, DIRECTOR, NATIONAL INSTITUTE ON AGING
            DR. STEPHEN KATZ, DIRECTOR, NATIONAL INSTITUTE OF ARTHRITIS AND
                MUSCULOSKELETAL AND SKIN DISEASES
            DR. JAMES B. SNOW, JR., DIRECTOR, NATIONAL INSTITUTE ON
                DEAFNESS AND OTHER COMMUNICATION DISORDERS
            DR. STEPHEN HYMAN, DIRECTOR, NATIONAL INSTITUTE ON MENTAL
                HEALTH
            DR. ALAN I. LESHNER, DIRECTOR, NATIONAL INSTITUTE ON DRUG ABUSE
            DR. ENOCH GORDIS, DIRECTOR, NATIONAL INSTITUTE ON ALCOHOL ABUSE
                AND ALCOHOLISM
            DR. PATRICIA GRADY, DIRECTOR, NATIONAL INSTITUTE OF NURSING
                RESEARCH
            DR. FRANCIS COLLINS, DIRECTOR, NATIONAL HUMAN GENOME RESEARCH
                INSTITUTE
            DR. JUDITH VAITUKAITIS, DIRECTOR, NATIONAL CENTER FOR RESEARCH
                RESOURCES
            DR. PHILIP SCHAMBRA, DIRECTOR, JOHN E. FOGARTY INTERNATIONAL
                CENTER FOR ADVANCED STUDY IN THE HEALTH SCIENCES
            DR. DONALD LINDBERG, DIRECTOR, NATIONAL LIBRARY OF MEDICINE
            DR. WILLIAM PAUL, DIRECTOR, OFFICE OF AIDS RESEARCH
            DENNIS P. WILLIAMS, DEPUTY ASSISTANT SECRETARY, BUDGET,
                DEPARTMENT OF HEALTH AND HUMAN SERVICES

                       OPENING REMARKS OF SENATOR SPECTER

        Senator Specter. The Subcommittee of Labor, Health, Human
    Services, Education will proceed. We have an extraordinarily
    distinguished group of scientists who are assembled here today
    as we proceed for our hearing on the budget of the National
    Institutes of Health.
        This is an occasion where President Kennedy's famous
    statement comes to mind when there was an enormous group of
    artists and scholars and intellects at the White House, and he
    is reported to have said that: ``this is the greatest
    assemblage of intelligence in the White House since Thomas
    Jefferson dined alone.'' That might be appropriate here as
    well.
        I think it is safe to say that the Congress, the
    administration, and the American people are enormously
    impressed with the contributions which NIH, all the
    contributions which you have made, with tremendous advances and
    so many lives, and I will not stop to particularize them with
    all of the Institutes represented here, and the budget of the
    NIH has gone up consistently over the years in recognition of
    the tremendous work you have done and the tremendous challenges
    there and the tremendous additional opportunities.
        We have set some high targets for NIH with a goal
    articulated by some of doubling in the next 5 years.
    Congressman Porter and I have set a goal of achieving a 7\1/2\-
    percent increase this year, which would provide $952 million
    extra, but it will not be easy to find the money.
        We had the budget resolution before the Senate a couple of
    weeks ago, and we passed a sense of the Senate amendment
    calling for $2 billion extra for NIH. What is not universally
    known is that a sense of the Senate amendment is a statement of
    druthers as opposed to real dollars. I knew instantly that a
    variety of interest groups would be coming to me as chairman of
    this subcommittee asking for their share, which was not really
    there, so I offered a hard money amendment to add $1.1 billion,
    offset with an across-the-board cut of four-tenths of 1
    percent, but that was not passed.
        So we face a situation where there is a sense to give NIH
    more money, but there is not a reservoir to fund it. That will
    be our task, and we will do our best. We are pleased to have
    the NIH leadership here today, and we will proceed with your
    testimony after giving a chance for other subcommittee members
    to make an opening statement if they care to do so.
        Senator Cochran.

                       OPENING REMARKS OF SENATOR COCHRAN

        Senator Cochran. Mr. Chairman, let me just say the NIH
    budget request is always a high priority for consideration by
    this committee. This year the passage of the budget resolution
    and the emphasis in that resolution on increasing the NIH
    budget makes it even more so this year, and we appreciate very
    much your being here to help us understand how that money can
    be used effectively to deal with the health problems of our
    country.
        Mr. Chairman, I also want to just thank you for including a
    second panel in today's hearing on the subject of funding under
    the Drug Assistance Program for the Ryan White Health Act. We
    have seen a shortfall of funding occur in our State of
    Mississippi, and we understand that that problem is going to
    spread to other States if it has not already, and we need to
    explore the options for dealing with that problem.
        A lot of people are in some jeopardy because of the
    shortfall in funding, and there was no request for supplemental
    funding from the administration, and we are eager to explore
    with administration officials and others--the State health
    officer from Mississippi, Dr. Ed Thompson is here; Dr. Earl
    Fox, who is Acting Administrator of the Health Services
    Administration is here; and someone who has been dropped from
    the program is here to talk about the consequences. We
    appreciate very much your cooperation with our problem.
        Senator Specter. Thank you very much, Senator Cochran.
        Senator Bond.

                  opening remarks of senator christopher bond

        Senator Bond. Thank you very much, Mr. Chairman. I am
    looking forward to the budget discussions and the many, many
    funding issues we'll get in here today, but I want to take a
    moment on something that has hit the headlines since this
    committee acted, and that is on the issue of cloning.
        As we all know, the National Bioethics Advisory Committee
    reported that it is morally unacceptable at this time for
    anyone to try to create a child through cloning. Well, I agree
    it is unacceptable, but I disagree with the recommendation that
    it may become acceptable later on.
        I do not think we are dealing with something that depends
    upon better technology. I think we are dealing with a moral
    imperative, and I do not think we can put a sunset on morality
    or ethical conduct.
        I happen to believe that human cloning is wrong and
    unethical now and always will be, regardless of whether
    technology for cloning is perfected. It is either immoral, or
    it is not, and I think we ought to quit talking about the issue
    and continue at least through this committee the very strong
    message that we have put forward to ban any such funding on
    cloning.
        I think it ought to go beyond that, that this committee
    clearly can do that.
        The President in his press conference on Tuesday suggested
    other nations should follow our country's lead banning human
    cloning. Well, the news is, we have not banned it. All we have
    done is said no to Federal funding, and a number of countries
    have instituted a permanent, complete ban on human cloning. I
    think it is wrong to send a message that we are only banning
    Federal funding of human cloning research, and that only for a
    short time period.
        I also am concerned that the commission punted on the issue
    of what is possible and what can be done, leaving open the
    possibility of cloning human embryos as long as the embryos are
    not implanted. It seems to me by allowing cloning research on
    human embryos to continue in the private sector, the commission
    said go ahead as far as you can. When it gets dangerous, then
    we will try and stop you.
        If we permit the cloning of human embryos, or the
    experimentation of cloning techniques on human embryos, then we
    risk sliding very far down the slope to human cloning, and once
    you get the cloning done, that is the hard part. The very
    easiest part would be to take the process one step further and
    implant an embryo in a woman's uterus, and I think that once
    the human embryos are cloned somebody will take that next step,
    and I think that there ought to be an effort to stop the
    private sector from doing it as well.
        There are some who have said we cannot put the genie back
    into the bottle and stop progress. I suggest that if that is
    the case our technological capability may be outrunning our
    moral sense.
        I continue to support biotechnology. I support the work
    taking place in the NIH Human Genome Center. There is a long
    list of things we can say about the progress made in the human
    genome project, the pace of gene discovery, everything from
    dealing with cystic fibrosis, colon cancer, and all these
    things. I think there is tremendous progress to be made, but I
    think we ought to continue our efforts and seek to expand the
    ban that this committee has put on the use of Federal funding
    for research on human cloning and urge other bodies and other
    areas to make that permanent.
        Thank you, Mr. Chairman.
        Senator Specter. Thank you very much, Senator Bond.
        I noted in the recent report that this subcommittee had
    considered a separate hearing on the cloning issue some time
    ago, and then the hearing was held, I believe it was in the
    Commerce Committee, and I know that your testimony at that
    time----
        Senator Bond. Senator Frist chaired it. I thought it was in
    Labor.
        Senator Specter. Well, I know that Senator Frist did chair
    that, and today's hearing might post some opportunity for some
    discussion as to what impact, if any, such a ban would have on
    the NIH human genome line, or other research. It is something
    that we might get into at least to some extent today, or
    perhaps that would be a subject for a later hearing. It is
    obviously a matter of enormous importance.

                      prepared statement of senator craig

        I have received a statement from Senator Craig, it will be
    inserted into the record at this point.
        [The statement follows:]

                  Prepared Statement of Senator Larry E. Craig

        I would like to thank the chairman for holding this hearing
    today regarding budget requests for the National Institutes of
    Health (NIH) for fiscal year 1998. I look forward to learning
    more about some of the scientific advances that have been made
    over the last year at the NIH, as well as the goals and long-
    term projects planned for the coming year. Past
    accomplishments, as well as future plans should be taken into
    account as we look at ways to appropriately allocate funds to
    the various programs within the NIH.
        For the last several months, my staff and I have been
    hearing from various groups representing a broad range of
    diseases that get their research dollars through the NIH. The
    resounding message we hear from all of these groups is that
    their interests are not being adequately addressed in the way
    of funding. Each group has extremely valid reasons for wanting
    more funding and I find it difficult to pick and choose which
    disease should get more research money.
        All of the groups I met with felt they should be given a
    higher priority-level for funding when the time came for us to
    make these decisions. This is not an easy thing to do. Each
    disease is important and each one has far-reaching impacts on
    our country. I think it is crucial that they decide on what
    level of funding is appropriate and then distribute those funds
    with a sense of fairness.
        I applaud the NIH for the work they have done in developing
    new therapies and cures for diseases that will help resolve
    some of our country's greatest health problems. The long-term
    investments they have made in the areas of medical research and
    training will help to achieve many more new discoveries.
        I do believe the NIH should be given funding adequate to
    support research that moves us toward cutting-edge treatments
    and prevention efforts, while helping to reduce overall health
    care costs. However, as we all know, there are harsh budget
    realities that we must work within and that is why we are here
    today. We must find a way to provide the appropriate level of
    funding for these programs while being fiscally responsible.
        I am strongly committed to fiscal responsibility. I also
    realize that the subcommittee is operating under significant
    budget constraints and will have to make difficult choices
    among competing programs. My hope is that the recommendations
    for NIH funding are made with the objective of searching for
    cost-effective solutions.
        We can make significant strides in the field of medical
    research while still working toward a balanced budget.
    Balancing the budget is all about setting priorities. Setting
    priorities is more important now than ever before because the
    debt has grown to the point where it is the major threat to
    programs most Americans consider to be most important. If we
    discipline ourselves and set priorities now, while moving
    toward and keeping a balanced budget, that is the best way to
    preserve our ability to fund our priorities in the future.
        I hope we will be able to shed some light on what these
    priorities must be as we continue to look for ways to
    adequately fund these very important programs, while working
    within our means. I look forward to hearing the testimony of
    all of our witnesses here today. Your expertise will be
    extremely valuable to me throughout this process.

                     summary statement of dr. harold varmus

        Senator Specter. Well, Dr. Varmus, we welcome you and your
    colleagues here. Let us begin with your testimony. The floor is
    yours.
        Dr. Varmus. Thank you, Mr. Chairman. I am very proud and
    pleased to be here representing the NIH for the fourth time at
    appropriations hearings. In view of the short amount of time
    allotted for this hearing, I prefer to submit my opening
    statement for the record.
        I will devote just a few minutes to introducing four vivid
    images used by the Institute and Center Directors at the House
    appropriations hearings to illustrate the productivity and
    potential of the investigators we support.

                      understanding diseases through genes

        The first image reflects the pace of gene isolation, which
    is accelerating, as well as new ways to visualize the genetic
    blueprint and to store images and make use of them for
    understanding diseases.
        The beautiful pictures of chromosomes displayed here
    illustrate a method devised and used by intramural scientists
    at the NIH for painting each human chromosome a distinct,
    unique color. This allows easy analysis of abnormal--that is,
    recombined--chromosomes in cancer cells, as shown at the bottom
    of this chart, facilitating diagnosis and leading to the
    identification of new genes that are involved in causing
    cancer.

                          use of molecular information

        The second image tells us a little bit about how we are now
    using molecular information to benefit patients with disease.
    This picture reflects the three-dimensional structure of an
    enzyme you have all heard about, the protease of HIV.
    Determination of the structure some years ago both in industry
    and by NIH-supported scientists assisted in the development of
    the current protease inhibitors you will be talking about with
    Dr. Fauci and others in the next panel. This image is helping
    in the design of improved versions of those drugs as well.

                         noninvasive imaging techniques

        The third image reflects our ability to use noninvasive
    imaging devices to understand the function of many organs,
    including, very importantly, the nervous system. What is shown
    here is a scan using positron emission tomography, or PET
    scanning. It shows the prolonged effect of short-term high dose
    amphetamines, a drug of abuse, on the production of a neural
    transmitter, called dopamine, in one part of the brain.
        At the start of this experiment, the monkeys can be shown
    to be producing dopamine, as you can see from the intensely
    colored dot that represents a certain area of the brain where
    dopamine is produced. Shortly after receiving amphetamines for
    about 10 days, that part of the brain's ability to make
    dopamine is suppressed, and it remains suppressed for a year
    after the amphetamine treatment. This suppression of dopamine
    production is also associated with profound behavioral changes.
    Importantly, after a year or so the ability to make the
    neurotransmitter reappears.
        The fourth image reflects our ability to use noninvasive
    imaging techniques to develop earlier and cheaper diagnostic
    procedures than we have currently available. In this case, the
    target is heart disease, disease of the coronary arteries. The
    image on the left, developed by a noninvasive procedure called
    magnetic resonance imaging, or MRI, shows a better picture of
    the coronary arteries than that obtained with the more
    expensive conventional and invasive procedure referred to as an
    angiogram.
        In the MRI image, you can actually see blood vessels that
    are the width of the lead in your pencil, and appreciate
    abnormalities--from a procedure which can be done repeatedly
    and at less cost than current angiography.

                                 budget request

        Well, Mr. Chairman, to continue work of this kind and to do
    a multiplicity of other things we do not have time to describe
    today, the President is requesting $13.078 billion, $337
    million more than in fiscal year 1997, a 2.6-percent increase.
    This budget includes an additional $90 million for the Mark O.
    Hatfield Clinical Research Center, but that is not part of the
    $337 million increase, because we received $90 million for the
    Center last year.
        Most of the increase----

                                budget increase

        Senator Specter. Dr. Varmus, let me interrupt you for just
    a moment. You say there is a $338-million increase, but where
    does that increase fit in when the overall health function in
    the President's budget has been reduced by $100 million?
        Dr. Varmus. Well, that is a question I think you would have
    to address to OMB. I do not know how to answer that question.
        Senator Specter. Well, I think it is important when talking
    about an administration request for an NIH increase when the
    overall budget request for the health account, of which NIH is
    a part, is $100 million less.
        Dr. Varmus. I have been assured by the administration that
    the President's request stands as originally proposed.
        Senator Specter. That is why I want to assure you that it
    does not add up in the current state of the record, and I think
    that one of the things we have to understand in this hearing
    are those hard facts. What we propose to find out today from
    each of the people here is what you have been able to do with
    your funding, what you could do with more funding, and
    specifically how many applications you are not able to handle.
        There are too many people talking about druthers and too
    few people talking about dollars. What I propose to do here
    today is to talk about dollars, so I do not want anybody to be
    under any illusion that the administration has $338 million
    extra for you.
        You may proceed.
        Dr. Varmus. Actually, I am reaching the end of my comments.
    I was simply going to point out that the vast majority of the
    increased dollars would go to research project grants. We
    expect that the increase requested for fiscal year 1998 would
    allow the NIH to support the largest number of grants in its
    history--nearly 27,000. My prepared statement gives several
    reasons why we are able to do this.

                               prepared statement

        Simply, I would conclude by saying that we are proud of
    what we have achieved with the generous appropriations we have
    received in the past from Congress and the administration, and
    we are optimistic about our future prospects. My colleagues and
    I would be happy to answer any questions you might have.
        [The statement follows:]
                    Prepared Statement of Dr. Harold Varmus
        I am pleased to present the President's budget request for the
    National Institutes of Health for fiscal year 1998, a sum of $13.078
    billion, an increase of $337 million (or 2.6 percent) above the fiscal
    year 1997 appropriation.
    The pace of medical research: Retrospective
        This is the fourth year that I have been privileged to represent
    the NIH at this Committee's proceedings. As on previous occasions, the
    Institute Directors and I will soon provide you with a summary of
    remarkable scientific accomplishments from the past year and a
    description of some exciting paths our research is likely to take in
    the coming year. This annual process of recounting our performance and
    predicting future productivity is important, stimulating, and
    necessary. But it should not obscure some essential features of our
    activities: that our ultimate task, the conquest of disease, is
    formidable; that the course of progress is best measured over many
    years or decades, rather than over a single year; that scientific
    advances require a long-term investment in training and facilities, as
    well as research projects; and that the benefits of research are
    unpredictable, demanding work on a broad range of topics to achieve
    success with even a single problem.
        Some of these features are dramatically illustrated by recent
    events in our battle against the human immunodeficiency virus (HIV) and
    the acquired immunodeficiency syndrome (AIDS). In the past year, the
    world has learned that many people with AIDS can experience dramatic
    improvement after treatment with a new class of anti-HIV drugs, called
    protease inhibitors, especially when combined with another class of
    drugs, called reverse transcriptase inhibitors. Although far from
    perfect, such potent anti-viral agents are unprecedented in the history
    of virology, and the achievements have been appropriately heralded in
    many news stories, including New Year cover stories in the lay press
    (Time magazine) and the science press (Science magazine).
        But the history of these accomplishments encompasses much more than
    a single year; it reaches back over many years and in many directions.
    It extends to the early isolation of retroviruses from birds and
    rodents, as long ago as 1910. To the identification in the 1970's of
    retroviral enzymes--reverse transcriptase and protease--that now serve
    as targets for the anti-viral drugs. To the determination of the three-
    dimensional structure of these enzymes a few years ago. To the
    development of inhibitors of cellular proteases over twenty years ago
    for the treatment of hypertension. To the lengthy training of
    investigators competent to pursue basic science, drug discovery and
    development, and clinical testing. And to the strength of our nation's
    laboratories, developed over decades, in governmental, academic, and
    industrial sectors.
    The pace of medical research: Prospective
        The breadth and depth of the investments required for the success
    of protease inhibitors underscore the importance of the strong
    bipartisan support that the NIH has received for the past fifty years.
    It is our responsibility to bring here each year new signs that such
    continued confidence is warranted and likely to produce future
    dividends. Thus, while we can take pride in end products, such as
    protease inhibitors, it is even more important to showcase recent
    discoveries, especially those findings from which many lines of
    investigation are likely to grow and measures to combat disease are
    likely to develop.
        To illustrate this point, I would like to refer again to the field
    of HIV research, this time to describe a recent, long-awaited finding
    that holds special promise. Soon after the discovery of HIV in the
    early 1980's, investigators found that CD4, a well-known protein on the
    surface of certain T lymphocytes, was required for HIV to attach to and
    infect target cells. But it was also learned that at least one other
    protein was required, and those proteins--the so-called co-receptors--
    remained elusive for many years.
        About one year ago, a research group in the NIH intramural program
    used an ingenious detection method to unveil co-receptors as members of
    a class of cell-surface proteins we already knew a great deal about--
    proteins that normally allow cells to detect secreted signaling
    molecules called chemokines. This discovery was especially exciting
    because another group of NIH intramural scientists had shown that
    certain chemokines could interfere with infection by HIV. Now we
    recognize that the interference is due to blockade of a co-receptor.
    Recently, some individuals were found to carry mutations that prevent
    production of a co-receptor. Because these people are actually
    resistant to infection by HIV, yet otherwise normal, co-receptors have
    emerged as prime targets for therapeutic and preventive strategies
    against HIV, stimulating a frenzy of experimental activity towards
    those goals.
    Recent culminations and inspirations
        For dramatic purposes, I have chosen to present in detail two
    paradigms of success--one representing culmination, another
    inspiration--from the domains of AIDS research. But other examples
    abound.
        The culminations are visible as practical health benefits, often
    accompanied by economic benefits:
      --The first successful treatment for stroke, using recombinant tissue
            plasminogen activator (tPA).
      --Increasing use of cell growth factors to protect patients against
            the bone marrow toxicities of cancer and AIDS therapies.
      --Declining mortality rates for many cancers, including some common
            ones.
      --Reduction in disability rates among the elderly.
      --The virtual elimination of Hemophilus influenza as a cause of
            childhood meningitis, due to widespread use of a new vaccine.
        Recent inspirational discoveries are also legion, especially in the
    fields of genetics, molecular biology, and neurosciences:
      --The genomes of baker's yeast and several bacteria (including the
            experimental warhorse, Escherichia coli) have been fully
            sequenced; a detailed map of the human genome as been assembled
            and posted on the Internet; and innovative technologies are
            being harnessed to understand this genetic cornucopia.
      --The locations of still unknown genes implicated in Parkinson's
            disease, prostate cancer, and other diseases, have been
            narrowed to small chromosomal regions, implying imminent
            isolation; and genes involved in many other disorders (such as
            retinitis pigmentosa, polycystic kidney disease, many birth
            defects, basal cell carcinoma, hemochromatosis, and some forms
            of diabetes) have been isolated and characterized.
      --The precise changes that occur in genes during our lifetimes are
            telling us how environmental agents, like tobacco and sunlight,
            cause cancer by inducing mutations, and how normal mechanisms
            for correction of DNA can fail, allowing harmful mistakes to
            persist in our genetic material.
      --Experimental manipulation of genes in mice has produced new animal
            models for studying many diseases (including Alzheimer's
            Disease, cardiac and vascular diseases, developmental defects,
            drug abuse, cancers, and others).
      --New imaging methods are informing our understanding of the central
            nervous system during early development, behavioral change,
            learning, pain, and emotion, and in a variety of disease
            states, including drug addiction.
      --Recently-identified molecules that govern the behavior of nerve and
            muscle cells are providing new prospects for repairing injury
            and degeneration in the brain and spinal cord.
        Such advances inspire further work and support our request for
    appropriated funds for fiscal year 1998. To help you see what these
    funds are likely to accomplish in the immediate future, the Institute
    Directors and I have identified many of the most exciting topics of on-
    going and anticipated research and grouped them within six broad Areas
    of Research Emphasis: the biology of brain disorders, new approaches to
    pathogenesis, preventive strategies against disease, therapeutics and
    drug development, genetics of medicine, and advanced instrumentation
    and computers. These categories of research reach beyond Institute
    boundaries to highlight the disciplines that we judge to show special
    promise for further discovery and practical application. You will be
    hearing from individual Institute Directors during the next two weeks
    about many specific examples that illustrate why we believe these
    topics to warrant such high priority.
    Clinical research and the new Clinical Research Center
        In my appearance before this Committee last year, I emphasized my
    concerns about several aspects of clinical research, especially the
    need to reinvigorate, reorganize, and rebuild the Clinical Center at
    the NIH. Since then, we have received $90 million in fiscal year 1997
    appropriated funds that allow us to proceed with the detailed planning
    and initial construction of what will be the Mark O. Hatfield Clinical
    Research Center. We have established a Board of Governors to oversee
    management of the Clinical Center, in accord with the recommendations
    of last year's report by Dr. Helen Smits and her colleagues to the
    Secretary of HHS and we have initiated plans to collect third party
    payment for care at the Clinical Center. We have continued to recruit
    outstanding clinical scientists, improve instruction in clinical
    research, toughen the review of protocols for clinical experiments,
    expand outreach to extramural clinical investigators, and forge
    stronger ties with nearby academic health centers. In the past few
    months, we have also developed a program to bring medical students to
    the NIH campus for one or two years to participate in patient-oriented
    research, in accord with a recommendation by the NIH Director's Panel
    for Clinical Research. (This important training program, to begin this
    Fall, is our first collaborative effort with the newly-constituted
    Board of the National Foundation for Biomedical Research, which
    received its first appropriated funds, $200,000, in fiscal year 1997.)
        The prospect of a new Clinical Research Center has re-energized
    clinical investigators at the NIH. Several months ago, we held a full-
    day celebration of our clinical research activities, with many
    presentations of past, present, and future projects on metabolic,
    infectious, and genetic diseases; diagnostic methods developed with
    molecular and novel imaging tools; therapies involving immune
    manipulation and gene transfer; and various approaches to disorders of
    the nervous system. For this occasion, Institute Directors prepared
    statements of their goals for patient-oriented research for the next
    several years; post-doctoral fellows showed posters outlining recent
    work; and architects and administrators described plans for the form
    and function of the new facility. In addition, the intramural clinical
    research community has proposed measures to strengthen our ability to
    recruit clinical investigators and to ensure a nurturing environment
    for them at the NIH.
    Other aspects of administrative oversight
        Clinical research is only one of many areas that have benefited
    from increased administrative oversight during the past few years. The
    Institutes have recently pledged to develop more interactive
    information systems, and the NIH is in the process of hiring a Chief
    Information Officer. Directives from both this Committee and the
    Administration to limit administrative costs have stimulated the
    adoption of streamlined methods for peer review, accounting, and other
    activities; more widespread use of electronic communication; sharing of
    resources through service centers; and reduced use of FTE positions. In
    response to your request, Mr. Chairman, we are currently undertaking an
    extensive study of all of our administrative functions, looking for
    opportunities to achieve even greater efficiency, without impairing
    support of the research enterprise and our traditional stewardship of
    Federal funds.
        We have also been vigilant about oversight of our research
    activities. In the spirit of the 1994 report on intramural research by
    the Marks-Cassell Committee and the 1995 Bishop-Calabresi report on the
    NCI, we have continued to review individual intramural research
    programs; a report on the NIMH program was recently completed, and four
    others are in progress. Complex activities--gene therapy, the AIDS
    program, and clinical research--have been subjected to detailed review,
    and many trans-Institute areas of investigation--nutrition, pain,
    sleep, and several specific diseases--are being monitored by special
    coordinating committees. In addition, we have initiated a process for
    evaluating the performance of Institute and Center Directors every five
    years; panels are currently reviewing the activities of the seven
    Directors with the longest terms of service.
    Plans for the proposed budget for fiscal year 1998
        The President's fiscal year 1998 budget for the NIH provides an
    increase of $337 million over the current NIH appropriation. In line
    with our traditional priorities, we plan to allocate about 80 percent
    of the additional funds ($271 million) to research project grants
    (RPGs), increasing support for these awards by nearly 4 percent over
    fiscal year 1997. We expect to increase the average size of both
    continuing and new awards by 2 percent, rather than the usual 4
    percent, allowing us to support about 7100 new and competing grants and
    to achieve an all-time high total of nearly 27,000 research grant
    awards. (Note that the Department of Commerce has determined the
    Biomedical Research Development and Price Index [BRDPI] to have been
    2.6 percent in 1996, the lowest rate in many years, consistent with the
    recent decline in the consumer price index ; we project BRDPI values of
    about 3 percent for 1997 and 1998.) The Budget also requests a $30
    million increase for the National Institute for Drug Abuse as part of
    the Administration's efforts to address the problem of drug use.
        We also request $90 million to support continued construction of
    the Mark O. Hatfield Clinical Research Center in fiscal year 1998,
    along with advanced appropriations of $90 million for fiscal year 1999
    and $40 million for fiscal year 2000, for a total of $310 million,
    which is required to complete the project by 2002.
        I will be pleased to answer any questions you and your colleagues
    might have.

                     summary statement of dr. stephen hyman

        Senator Specter. What I would like to do, Dr. Varmus, is
    proceed around the table and get a brief statement from each of
    the distinguished administrators who are here as to how much
    money each has, how many grants they are able to give, how many
    grants have to be turned back, and if they had, say, a 7\1/2\-
    percent increase, what that would do for them.
        Let us start with you, Dr. Hyman.
        Dr. Hyman. I do not have in front of me our precise budget
    number, but I can tell you.
        Senator Specter. Give me a generalized number.
        Dr. Hyman. We are just over $700 million, including nearly
    $100 million for our AIDS budget, which is focused on AIDS
    behavioral prevention, in the National Institute of Mental
    Health.
        Do you want me to give you the precise numbers?
        Senator Specter. I do.
        Dr. Hyman. Our----
        Senator Specter. If you do not have a precise number, give
    me an approximation, please.
        Dr. Hyman. The non-AIDS budget proposed is $629,739,000,
    and then the AIDS budget is $98,510,000. This is in the
    President's proposal.
        Senator Specter. With respect to research grants, can you
    tell me how many that allows you to have, and how many you turn
    down?
        Dr. Hyman. In the current budget year we expect to be,
    because we are not at the end of the budget year, to be funding
    about 24 or 25 percent of our grant applications, and turning
    down, therefore, about 75 percent of our grant applications.
        Senator Specter. Could you give us an estimate as to what
    you think you could accomplish if you could have more of those
    grant applications? Suppose you were able to double them. Let
    us take the figure of doubling over 5 years. What could you
    accomplish with that kind of a doubling?
        Dr. Hyman. Let me give you some highlights, Senator
    Specter.
        Brain research, especially with respect to mental
    disorders, has undergone a recent revolution in our ability to
    understand how the brain functions and how things go wrong with
    mental illness.
        Areas that we would like to be able to invest in include
    understanding the genetics of mental disorders. This is
    extremely complex. In no case in mental disorders does a single
    gene cause vulnerability.
        It turns out that for diseases like schizophrenia, manic
    depressive illness, serious depression, and others, multiple
    genes interact with the environment to produce illness. We
    would like to be able to invest in no small part to be able to
    capitalize on the findings of the human genome project.
        A second important area that has received inadequate focus
    in the past but which is absolutely critical is children's
    mental health. There have been an inadequate number of clinical
    trials in children. As you may or may not know, there is very
    little in the way of approved psychotropic drugs for children,
    and yet we recognize that the age of onset of major depression,
    for example, in the United States is getting earlier and
    earlier.
        We also have paid inadequate attention historically to
    important diseases like autism, and would like in general to be
    able to increase our efforts in childhood mental health.
        In addition, we need to engage in large-scale clinical
    trials of the kind that will validate comprehensive treatments
    for diseases like schizophrenia or manic depressive illness in
    an era of managed care. This is a critically important area for
    us.
        I will not go on, because you want to talk to everybody
    else, but I think it is very important to state that we are in
    an era now where using a combination of molecular biology tools
    and neuroscience tools we are beginning to understand how the
    brain works in forming both normal and abnormal cognition, or
    thinking, and normal and abnormal emotion, and what we would
    like to be able to do is to use these tools to understand how
    the brain functions and then rapidly translate these
    discoveries into novel treatments for people with mental
    disorders.
        Senator Specter. I have started the clock for 5-minute
    rounds so that I will not detain my colleagues, but I intend to
    go around the room so that each of you who will follow will
    know where I am heading on the questions.
        Dr. Hyman, if you were to put it in layman's language, what
    could you accomplish with a 50-percent increase? What could you
    do on the issue of mental illness if you had that funding?
        Dr. Hyman. I think that over time we would discover
    vulnerability genes, so we would know who was at risk. We would
    be able to intervene earlier. We would have better treatments
    for adults. We would have a fundamental knowledge base for the
    treatment of children, and we would also improve the
    dissemination of the knowledge that mental disorders are real,
    diagnosable, treatable brain diseases throughout, for example,
    primary care settings where these diseases are often
    underrecognized and undertreated.
        Senator Specter. Would you give us in writing a more
    precise statement as to what you could accomplish?
        Dr. Hyman. Yes.
        Senator Specter. Focus on how we would translate that to
    brief floor statements to persuade our colleagues to increase
    funding, and if it is possible also for you to add in the
    calculation as to what money would be saved, how cost-effective
    it would be. We hear that on Alzheimer's, for example, saving
    so much money.
        We will come to Alzheimer's, but to the extent you can
    quantify it, and what will happen to your program if there is
    no increase but a slight decrease, if you have a proportionate
    share of the $100 million cut on the health account, what will
    happen to your unit.
        Dr. Hyman. I would be happy to do that. I can say we have
    just had some help from the World Bank and World Health
    Organization, which have calculated that mental illnesses, most
    notably diseases like major depression, schizophrenia,
    obsessive-compulsive disorders are among the absolute leading
    causes of disability, and disability adjusted life years lost.
    This is true in the United States and Europe already and soon
    will be worldwide. There are immense social costs to our
    inability to treat these diseases fully at this time.
        Senator Specter. Well, if you could quantify that on a
    cost-effectiveness basis I think it would be of interest to
    Congress as well as to the public.
        [The information follows:]
                      National Institute of Mental Health
    Accomplishments
        Throughout its fifty years, the NIMH has conducted and supported
    research that has made possible the development and use of many new
    treatments for mental illnesses--where previously there were no
    effective treatments. This time span saw the first medications that
    could alleviate mental illness, establishing that these illnesses are
    biological in origin and providing a powerful weapon against
    stigmatization of patients.
        Effective treatments have greatly improved the lives of people with
    mental illness and have also produced significant economic benefits.
    For example, lithium therapy for manic depression has saved the U.S.
    economy almost $6 billion per year since 1970; and clozapine
    maintenance treatment for schizophrenia saves approximately $1.4
    billion annually, primarily by preventing hospitalizations of the
    estimated 60,000 patients receiving clozapine.
        Continuing improvements in psychotherapies have replaced or
    augmented pharmacologic treatments for some patients. In 1990, one
    mental illness, unipolar major depression, was the leading cause of
    disability. This disability has a major and growing impact on both the
    direct costs of health care and the loss of economic productivity; it
    is a potent incentive to accelerate efforts to reduce the burden of
    mental illness.
        Decades of painstaking research have brought neuroscientists to the
    threshold of understanding the Structure and operation of that most
    complex of human organs, the brain. To understand cognition, emotion,
    and what goes wrong to produce the brain disorders that we call mental
    illnesses will require progress at the levels of molecules and genes,
    cell, circuits, and psychology.
        This is an enormous challenge because mental illnesses don't appear
    to have any single cause; rather they result from multiple
    vulnerability genes acting at different times during brain development
    combined with influences of environmental factors. Using genetic
    engineering and cell recording techniques in mice, researchers have
    begun to describe the underlying biology that constitutes the molecular
    basis of memory formation in the brain. Other scientists have made
    major advances in discovering how the brain functions in emotions such
    as fear; this progress will revolutionize our understanding of the
    neurobiology of emotion and how best to treat severe anxiety disorders,
    such as panic disorder and obsessive-compulsive disorder.
        Another group of scientists, using advanced molecular techniques
    and basic behavioral science, have identified a gene named clock, that
    controls daily biological rhythms. This work will help understand human
    problems ranging from mood disorders, such as depression, to sleep
    disorders to jet lag. A recent study, which illustrates the potential
    usefulness of neuroimaging techniques for understanding mental
    illnesses, found that people with schizophrenia had a decreased density
    of dopamine D1 receptors in the prefrontal cortex and that the extent
    of decrease correlated with the severity of the illness.
    What could be accomplished in the future with additional funds
        Expansion of research on the complex genetics of the major mental
    disorders would lead to a much more complete understanding of the roles
    of genetic factors in mental illnesses--schizophrenia, schizoaffective
    disorder, manic depressive illness, major depression, autism, panic
    disorder, and obsessive-compulsive disorder--which would lead, in turn,
    to clearer insights into the origins, optimal treatments, and ways to
    prevent these illnesses.
        Increased emphasis on the use of modem molecular and integrative
    neurobiology to understand the basis of mental disorders would discover
    new targets for novel therapeutic agents.
        Acceleration of research on the application of modem genetic
    techniques in animal models would enable scientists to understand how
    the brain processes cognition (including memory) and emotion, while
    neuroimaging techniques will allow scientists to translate the findings
    of this animal research into humans.
        Expansion of research on the prevention and treatment of mental
    disorders in children would yield critically needed information on the
    best and safest ways to reduce the terrible consequences of mental
    illness for our youngest citizens.
        Initiation of clinical trials of new drugs recently approved for
    the treatment of manic depressive illness and psychotic disorders would
    allow NIMH to advise mental health care providers on the most effective
    treatments for each type of patient
        Finally, research on imaging techniques could lead to an
    integration of pharmacologic and behavioral approaches to treatment.

                               prepared statement

        Dr. Hyman. If I may, Mr. Chairman, I have a prepared
    statement which I would like to have inserted into the record.
        Senator Specter. Your statement will be inserted into the
    record at this point.
        [The statement follows:]
                    Prepared Statement of Dr. Stephen Hyman
        It is my pleasure to appear before you to discuss the research
    programs of the National Institute of Mental Health (NIMH). My first
    year as Director of the NIMH has reinforced my perception that this is
    a period of extraordinary scientific opportunity for understanding the
    brain, its role in behavior, and what goes wrong in the brain to
    produce mental illness. The knowledge we are gaining should improve our
    capacities to treat and, eventually, prevent an array of mental
    disorders.
        In this statement, I will comment briefly on the burden of mental
    disorders; highlight key scientific accomplishments and opportunities;
    and describe several administrative steps we are taking to speed our
    progress as efficiently as possible.
        Schizophrenia, major depression and manic depressive illness,
    severe anxiety disorders, obsessive compulsive disorder, anorexia
    nervosa, and other severe mental illnesses affect some 5 million
    adults. Additional millions of Americans suffer other disorders that
    occur across the lifespan, from childhood autism to dementias in the
    aged. All told, mental disorders cost the United States more than $148
    billion each year. The U.S. experience is not atypical. A study
    sponsored by the World Bank and World Health Organization recently
    forecast that by the year 2020, as we effectively meet the challenge of
    infectious disease in developing countries, major depression alone will
    rival chronic ischemic heart disease as the single leading cause of
    disability worldwide (Table 1). The study makes it clear, moreover,
    that the courses of the top five diseases from all causes are heavily
    influenced by human behavior.
        Given the immense public health burden of brain disease and its
    impact on our Nation's productivity, I am encouraged that mental
    illness has emerged as a prominent theme in our Nation's efforts to set
    health care priorities, as evident, for example, in the debate
    concerning insurance parity. Americans are increasingly aware that
    serious mental illness is not a moral failing or weakness, but a
    disorder of a specific organ, the brain, just as coronary artery
    disease is a disorder of a specific organ, the heart. Mental illnesses
    are brain disorders that will be understandable in terms of molecular
    and cellular processes in the brain and the brain's interaction with
    the environment. With this recognition, the stigma once associated with
    mental illness is fading.
        Independent analyses show that research is an effective response to
    the economic and social burden of mental illness and to the needs of
    patients and their families. For example, a study published in the
    journal, Science, 1994, documents savings of $145 billion to the U.S.
    economy since 1970 when the FDA approved lithium for treating manic
    depressive illness. In addition, a study in the American Journal of
    Psychiatry, 1993 showed that clozapine maintenance treatment for
    schizophrenia, approved by the FDA in 1990, yields annual savings of
    $1.4 billion for the estimated 60,000 patients receiving this
    medication. I believe these treatments, and the resultant savings,
    reflect a return on a sustained research investment.
        Modern mental health research relies on many of the same
    methodologies and technologies used in other areas of medicine, but
    applies them to an array of questions that extend from the cell to
    society: from studies of the genetics of complex human disorders, to
    molecular neurobiology, to brain circuits and behavior, to clinical
    trials of new treatments, to sophisticated services research designs
    needed to understand the effectiveness of treatments in complex, real-
    world settings.
        The human brain is the most complex structure in our known
    universe. If we are to understand the roots of mental illness, we must
    press on with fundamental investigations of the brain. The truly novel
    and effective treatments of tomorrow will be based on the investments
    in basic science that we make today. The dividends of our investment
    are seen in recent NIMH-supported basic science advances:
      --We have identified a molecule--a protein found on the surfaces of
            nerve cells--that early in brain development appears to guide
            specific emerging cells to become part of the brain's limbic
            system, which is involved in the control of emotion and
            motivation. Any alterations in such guidance systems in the
            developing brain could lead to a cascade of abnormal circuit
            formation and could be the cause of illnesses such as
            schizophrenia or autism.
      --Another accomplishment is the deciphering of a cellular mechanism
            that may be responsible for pruning of excess cortical neurons
            that are purposely over-produced in early phases of brain
            development. Here too, the discovery helps to flesh out a
            suspected developmental cause of the brain defects in
            schizophrenia.
      --In yet another discovery, scientists using advanced molecular
            techniques in the mouse, coupled with basic behavioral science,
            have identified a gene that controls daily biological rhythms.
            A behavioral test, which exploits the tendency of mice to be
            highly active during the night and less active in daytime,
            enabled isolation of a mutation in a gene named clock, which
            controls the duration of daily biological rhythms. This work,
            and related research in the fruit fly, is clarifying a complex
            chain of events that regulate our sleep/wake cycle, a cycle
            that is disrupted in mood disorders, and also is crucial to
            understanding human problems ranging from sleep disorders to
            jet lag.
        Such advances make it clear that innovative animal models and the
    molecular biological approaches constitute an essential foundation of
    our ``bottom up'' efforts to understand larger-scale brain systems,
    their role in behavior, and what it is that goes awry in brain function
    that leads to mental disorder.
        Human genetics is a vital component of our efforts. As molecular
    genetics comes of age in medical science, we see that disorders such as
    schizophrenia and manic depressive illness are complex disorders, much
    like diabetes and hypertension. We know that certain genetic patterns,
    while not directly causing an illness, can lay a foundation for
    increased vulnerability to illness. We know that individual
    vulnerability to mental disorders and other complex traits is due to
    the interaction of multiple genes rather than to a flaw, or mutation,
    in a single gene. Moreover, it appears that no single genetic mutation
    is necessarily shared by all individuals with a given disorder--indeed,
    there likely are multiple genetic pathways to vulnerability.
    Environmental factors may then interact with the genetic vulnerability
    to lead to the onset of a specific illness.
        Modern genetics also permits us to understand brain-behavior
    relationships in animal models. Scientists now can manipulate the mouse
    genetic code by adding or deleting single genes, and soon will be able
    to deactivate genes in specific brain locations at a predetermined time
    in the animal's development. These same approaches will help us
    understand human disease vulnerability genes whenever we find them.
        Of course, what we glean from molecular genetics and other basic
    research will be most relevant to clinical concerns only when we
    understand these processes against a backdrop of social context,
    interpersonal interactions, individual psychology, and neural circuits.
    Thus, each advance in understanding genetic mechanisms opens
    opportunities for basic and clinical investigation. To ensure that we
    capitalize fully on these opportunities, the NIMH attaches high
    priority to research that translates basic findings into the realm of
    clinical investigation and application.
        NIMH-funded research on childhood and adolescent mental disorders
    illustrates our commitment to clinical and treatment research. As many
    as 20 percent of young Americans between the ages of 7 and 14--
    approximately 10 million children--suffer from mental health problems
    severe enough to compromise their ability to function.
        While any interruption to normal developmental processes is of
    concern to us, we attach particularly high priority to research on
    autism, a severe disorder of communication and behavior that affects
    more than 100,000 Americans. Family and twin studies point to a genetic
    cause in autism, particularly when multiple cases occur in a family.
    Among siblings of an autistic person, the prevalence rate for the
    disorder is 75 times higher than in the general population. The
    importance of finding the genes responsible for autism lies in their
    value in diagnosis as well as in providing essential information about
    the regulation of brain development. NIMH researchers at three
    different locations now are studying families using a combination of
    strategies, and the likelihood of identifying susceptibility genes in
    the next several years is high. As this search progresses, neuroimaging
    studies are providing evidence of abnormalities in several brain
    regions in persons with autism. Such findings strengthen hypotheses
    that a genetically-triggered disturbance in brain development early in
    fetal life is responsible for the devastation of autism. Our research
    complements an NIH-wide effort focused on autism, with other
    concentrated activities in the neurology, child health, and
    communicative disorders institutes.
        For all childhood mental disorders, we must have a full range of
    interventions; that is, treatments based on behavioral approaches such
    as psychotherapy as well as medications. In one recent project,
    investigators developed a 16-week cognitive-behavioral intervention
    specific to the needs of children with anxiety. Untreated, childhood
    anxiety disorders tend to persist into adulthood and are associated
    with a range of psychological and social impairments. The
    psychotherapeutic approach reduced anxiety, and these benefits were
    maintained for more than three years.
        Such advances do not permit us to rest on our laurels. Recognizing
    that resources are limited, in my first year at NIMH, we have worked to
    identify and prioritize research challenges. Let me report briefly on
    progress in three major areas to strengthen our programs and make them
    even more cost-effective.
        First, our Intramural Research Program Planning Committee, which
    was created in response to congressional interest in the revitalization
    of intramural research across the NIH campus, has completed its work,
    and I have begun to implement the nearly 80 recommendations it
    developed. These call for making many labs smaller; apportioning funds
    in a way that will offer incentives for translational research;
    creating incentives for excellence; and freeing up resources so we can
    recruit and support the most outstanding young and mid-career
    investigators. A top quality intramural program can create a superb
    complement to our extramural program by bringing together a critical
    mass of both basic and clinical researchers and, by stability of
    funding combined with rigorous review, permitting them to undertake
    long-term-, higher risk-, and interdisciplinary projects.
        Secondly, with extensive consultation from our extramural
    community, I have undertaken a fundamental restructuring of our
    extramural research funding divisions. The first impetus for this
    change is fundamentally scientific--that is, our divisional structure,
    developed for a previous scientific era, today impedes our efforts to
    encourage and make necessary scientific connections--for example,
    between basic and clinical neuroscience. Changes we are making also
    will yield greater administrative efficiency; a structure that more
    closely reflects the contemporary scientific process will permit us to
    use our administrative funds in the most streamlined and effective
    manner.
        A third area of change concerns the role of our National Advisory
    Mental Health Council. The breadth of interests and expertise of our
    Council members is impressive, as is the intensity of their commitment
    to mental health issues. I have been immensely gratified by the
    enthusiastic and productive response of our Council members to my
    invitation to take a more active working role in conducting in-depth,
    hands-on reviews of the operations of various NIMH's programs: Our
    science communications and prevention research portfolio are now being
    examined by Council work groups and more will follow.
        Let me conclude by returning to the most important aspect of our
    work, which is the science. Our efforts in the coming year will be
    aimed at new initiatives in the genetics of vulnerability to mental
    disorders, using the tools of molecular biology and neurobiology
    together to understand the function of the normal brain and how things
    go wrong with mental disorders, and development of programs to
    translate what we learn from basic brain and behavioral research to
    clinical applications. In addition we will begin reforming our approach
    to clinical trials and adapting what we learn to people in the real
    world. An important task for the mental health services research
    community will be to study the impact of managed care on the mentally
    ill, a particularly vulnerable population.
        For the scientific activities I have highlighted here and for
    related programs, NIMH requests $629,739,000 for fiscal year 1998.
    Thank you Mr. Chairman. I will be pleased to answer any questions.

    Table 1.--Worldwide burden of disease

            Rank and cause                                           Percent
    Estimate 1990:
        1 Lower respiratory infections................................   8.2
        2 Diarrheal diseases..........................................   7.2
        3 Perinatal conditions........................................   6.7
        4 Unipolar major depression...................................   3.7
        5 Ischemic heart disease......................................   3.4
    Projection 2020:
        1 Ischemic heart disease......................................   5.9
        2 Unipolar major depression...................................   5.7
        3 Road traffic accidents......................................   5.1
        4 Cerebrovascular disease.....................................   4.4
        5 Chronic obs pulmonary disease...............................   4.2

    Note: Global Burden of Disease 1996--WHO, Harvard School of Public
    Health, World Bank.
    ---------------------------------------------------------------------------

                     summary statement of dr. stephen katz

        Senator Specter. Dr. Katz, your unit is arthritis.
        Dr. Katz. Yes, sir; it is the National Institute of
    Arthritis and Musculoskeletal and Skin Diseases. Our budget for
    1997 is $257 million, and our proposed budget for 1998 is
    $263,242,000.
        Senator Specter. So you have a reduction.
        Dr. Katz. No; it went from $257 million for 1997 to $263
    million requested for 1998. Our success rate anticipated for
    this year is 25 percent. That is, 25 percent of the
    applications will be funded, for an estimated total of 167
    successful applications. That means we are turning down
    approximately 503 applications this year.
        There are many exciting areas of research within the broad
    range of diseases that the Institute covers. In the area of
    osteoarthritis, as the aging population increases, the impact
    and frequency of osteoarthritis, as well as the disability
    associated with osteoarthritis are also increasing.
        Another major public health problem that we have an
    interest in and commitment to understanding is osteoporosis.
    There have been major advances in understanding osteoporosis,
    including the diagnosis of osteoporosis using ultrasound or x-
    ray, as well as recent important advances in understanding how
    drugs affect osteoporosis.
        Senator Specter. Dr. Katz, if you were to double your
    budget, what more could you accomplish?
        Dr. Katz. We could move at a faster pace with regard to our
    understanding of the process of bone formation and bone
    breakdown as well as the process of cartilage breakdown. We
    would also improve our understanding of how implants that are
    used for hip replacement and knee replacement can be improved
    so that the bone that surrounds these implants does not break
    down--a major complication.
        We can also better understand many of the skin diseases and
    arthritic diseases where inflammation is a major process, and
    the pace would move much, much more rapidly with an increase in
    funding.
        With an increased understanding, of course, comes an
    increased likelihood for better therapeutic interventions. Many
    of the therapies that are used in the arthritic diseases and
    skin diseases are nonspecific. That is, they not only decrease
    inflammation, but they also have adverse effects, or negative
    effects in other areas.
        With increased knowledge investigators around the country
    and around the world are identifying very specific markers to
    target for specific interventions that will decrease the side
    effects from some of the drugs that are being used today.

                    summary statement of dr. phillip gorden

        Senator Specter. I would like to turn now to Dr. Phillip
    Gorden, Director of the National Institute of Diabetes,
    Digestive and Kidney Diseases.
        Dr. Gorden, what is your budget for last year and what for
    next year projected?
        Dr. Gorden. Mr. Chairman, our budget for current fiscal
    year 1997 is $815.982 million. Our requested budget for fiscal
    year 1998 is $833.802 million.
        Senator Specter. Dr. Gorden, if we were able to project
    ahead a doubling of your budget, what will you project that you
    could accomplish?
        Dr. Gorden. Mr. Chairman, we have responsibility for some
    of the most serious chronic diseases in the country, including
    diabetes, obesity, kidney disease, liver disease. And in many
    of these areas--for instance, in diabetes--we have made really
    a major discovery of the efficacy of treatment. Now, our
    ability to follow up on that really is a question of what
    resources are going to be available to us. And so these are
    areas that we have immediately moved into. We have moved into
    areas of prevention in both noninsulin dependent and insulin-
    dependent diabetes. And we have only just begun to explore the
    opportunities that are available to us.
        Senator Specter. What prospects do you see for the success
    of prevention?
        Dr. Gorden. Well, we have two major trials underway at the
    present time. And we are very optimistic about at least partial
    success. I have to modulate that, because the nature of these
    trials is not going to completely prevent the disease. But if
    we can simply make inroads into prevention, this will be a
    major step forward.
        We have discovered very recently a major hormone regulating
    energy metabolism called leptin. The ramifications of this
    research are just beginning to emerge. This is a burgeoning
    area of research.
        We just discovered the genes that are responsible for
    important diseases such as polycystic kidney disease--two very
    important genes that lead to this important form of end-stage
    renal disease. The ramifications of that are just beginning to
    emerge. We cannot really see exactly where this is going, but
    we clearly know that these are major areas of progress.
        So that there are issues that are clearly on the table now,
    that represent real progress and represent the kind of thrust
    of the future. And we are just really beginning to understand
    where these particular opportunities and avenues are leading.
        Senator Specter. Thank you very much, Dr. Gorden.
        I will yield to my colleague, Senator Cochran.
        Senator Cochran. Mr. Chairman, just in time. I was going to
    point out that Dr. Gorden is one of our favorite sons from the
    State of Mississippi. [Laughter.]
        All the way from Baldwin, MS, to Washington, DC, where he
    is respected as one of the Nation's finest research scientists
    and physicians. We appreciate the good work that he is doing.
    And it is a pleasure to see him and Dr. Varmus and all of you
    who are here today to review with us this budget request.
        I am going to defer any questions to specific members of
    this panel, and let them all have a chance to make their
    presentation before I ask any questions, if that is all right.
        Senator Specter. Senator Bond.

                                  sarcoidosis

        Senator Bond. Mr. Chairman, I have a question, a specific
    area question, either to Dr. Varmus or Dr. Lenfant. I
    understand that sarcoidosis is a common chronic disease of
    unknown cause which affects all races, both sexes and can
    appear in almost any body organ. The NIH Heart, Lung and Blood
    Institute provides about $4 million for research on this
    mysterious disease. And I would just like to find out where we
    are in the research on it. Are we getting any closer to
    identifying the cause and perhaps the cure of it? And is this
    an area where there is a significant opportunity for the
    advancement of scientific knowledge?
        Dr. Varmus. Thank you, Mr. Bond. I would like to defer to
    the true expert, Dr. Lenfant, on this one. And if time permits,
    I would like to make a few comments about your opening remarks.
        Senator Bond. I did not doubt you would.
        Dr. Lenfant. Thank you, Senator.
        Yes; the National Heart, Lung and Blood Institute has a
    research program on sarcoidosis, on which we spend a little bit
    more money than what you say. I think the expenditure for this
    year is on the order of $6 million.
        Your question of whether there are some opportunities which
    are before us for significant progress, I think the answer to
    that is yes. We have come to learn, during the last few years,
    that there may be some very significant genetic factors which
    control this condition.
        I should say that it is a condition which affects mostly
    African-Americans and also the Scandinavian countries.
    Elsewhere in the world it is very rare to see sarcoidosis.
        We have initiated, last year, a program to uncover what
    genes might be intervening in this disease. And, thus far, the
    work is progressing quite well. And I am quite confident that
    within a few years we will have some very significant progress
    to report to you.
        Senator Bond. Well, is it a question of just time or the
    lack of resources? And we are talking about a significant
    number of people who are affected by it.
        Dr. Lenfant. Indeed. Indeed.
        Senator Bond. And I understand that the cause of death in
    many of these cases has been identified as lung problems or
    something. So it is really overlooked, the basic, underlying
    disease.
        Dr. Lenfant. Your question is quite timely actually. Years
    ago, there was lots of work which was going on, on this
    condition, which had been relatively unsuccessful. Now we see
    an advance of the molecular and genetic approaches and
    molecular biology. There is a resurgence of activity. And sure
    enough, the research on this disease competes with the research
    on all the conditions. And within the resources that we have,
    we have allocated some resources to it. Whether we could do
    more beyond that, the answer is ``yes.'' Whether we could do it
    faster, I suppose we would if we had the opportunity to invest
    more resources into this project.

           national academy of sciences report on resource allocation

        Senator Bond. Dr. Varmus, I guess this brings me to the
    broader question. A couple of years ago, the National Academy
    of Sciences came to me because I was the chairman of the
    committee that funds NSF. And the NAS was going to come up with
    a means of evaluation of how we spend our scientific dollars.
        Now, I know you have your own priority system within NIH.
    They were telling me that for funding scientific research
    across the board, including NIH and perhaps within it, they
    were going to develop, I guess last year, a better scientific
    protocol for allocating the research dollars. And I wonder,
    have you heard anything about it? Where is it? And how can we
    get a handle on it?
        Dr. Varmus. Mr. Bond, there was a report presented by Frank
    Press, the previous President of the National Academy of
    Sciences, about a year and a half ago, I believe. It did not
    deal with priority setting at the level of specific diseases,
    but instead proposed another way to look at the nondefense part
    of the research portfolio, as a consolidated evaluation
    process--not consolidating all the agencies, but consolidating
    the budget-forming process. And that has been very widely
    discussed among science policy people.
        We could provide you a copy of the report if you would
    like.
        Senator Bond. I would appreciate it.
        Thank you, Mr. Chairman.
        Senator Specter. I thank you very much, Senator Bond.
        [Clerk's note.--Due to its volume, the above mentioned
    report is being retained in subcommittee files.]

                      summary statement of dr. carl kupfer

        Senator Specter. Let us turn at this point to Dr. Kupfer,
    Director of the National Eye Institute. Would you tell us your
    budget for this year and the proposed budget for next year,
    please?
        Dr. Kupfer. Yes, sir; for fiscal year 1998, the budget
    request is $330.955 million. With that, we would be able to
    fund 228 competing grants and turn back about 400 grants.
        Senator Specter. And if you had a doubling of your budget,
    what would you anticipate being able to accomplish?
        Dr. Kupfer. I think two of our major challenges deal with
    the age-related macular degeneration, which is rapidly becoming
    of epidemic proportions, and the complications of diabetes,
    specifically diabetic retinopathy. With respect to the age-
    related macular degeneration, I think we would be able to move
    more rapidly into the areas of transplantation of tissue into
    the back of the eye to try to rescue the degenerating cells,
    and to explore more fully, growth factors that again would
    maintain these cells.
        With respect to diabetic retinopathy, we are on the verge
    of finding more effective and safe inhibitors of a particular
    enzyme which we think brings about the complications of
    diabetes. And I think we could accelerate finding this
    inhibitor and then employing it in clinical trials.
        I think those would be two of our major activities with
    additional resources.
        Senator Specter. Thank you, Dr. Kupfer.

                               prepared statement

        Dr. Kupfer. If I may, Mr. Chairman, I have a prepared
    statement which I would like to have inserted into the record.
        Senator Specter. Your statement will be inserted into the
    record at this point.
        [The statement follows:]

                     Prepared Statement of Dr. Carl Kupfer

        Mr. Chairman, I am pleased to report that the NEI continues
    to conduct and support research leading to treatment for
    blinding eye diseases, including glaucoma, cataracts, and
    diabetic retinopathy. Furthermore, we also are pursuing
    exciting new avenues of research for one particular eye disease
    that is causing increased concern among older Americans, age
    related macular degeneration, or AMD.
        The American eye is aging. The first group of ``baby
    boomers'', those born between 1946 and 1964, turned 50 last
    year. This group, by their sheer numbers, has changed, and
    continues to change, the fabric of American society. In 1995,
    these ``baby boomers'' numbered more than 79 million.
        As this group of Americans marches toward their golden
    years, they will become more susceptible to serious eye
    diseases, such as AMD. AMD is a common eye disease of the
    macula, a tiny area in the retina that helps produce sharp,
    central vision required for ``straight ahead'' activities such
    as reading, sewing, and driving. A person with AMD loses this
    clear, central vision. AMD is the leading cause of severe
    visual impairment and blindness in the United States. It is
    estimated that AMD already causes visual impairment in
    approximately 1.7 million of the 34 million Americans over age
    65, and its prevalence is expected to reach 6.3 million by the
    year 2030. Since fiscal year 1989, the NEI has devoted an
    increasing percentage of its annual appropriation to AMD
    research.
        Technology has advanced greatly in recent years, and as a
    result, the NEI has identified several areas of research to
    learn what causes AMD and how it can be treated more
    successfully. Through NEI's Age-Related Eye Disease Study,
    researchers at 11 clinical centers around the country are
    assessing the aging process, potential risk factors, and
    quality of life of 4,700 patients to pinpoint the earliest
    signs of AMD. Once such studies have helped us to determine how
    macular degeneration develops, we might be able to change its
    course; when we know for certain what risk factors contribute
    to development of the disease, we can caution patients to avoid
    them. This same study also includes clinical trials that will
    help determine the effects of certain vitamins and minerals in
    preventing or slowing the progress of AMD. In particular,
    researchers are examining whether vitamins C and E, beta-
    carotene, and zinc can provide the macula with greater
    protection, thereby preventing or slowing progression of the
    disease. If dietary supplements prove effective, it would have
    a huge impact on AMD treatment and reduce our nation's risk of
    visual impairment or blindness.
        Another study begun last year is evaluating genetic and
    environmental factors related to AMD and examining an
    underlying hypothesis that genetic factors play a significant
    role in this complex chronic disease. Participating families in
    this study include those with both a single case of documented
    AMD and those who have at least two living siblings (or a
    parent) with documented AMD.
        One of the risk factors that may be associated with AMD and
    vision loss is the presence of drusen, which are white, clumpy
    deposits that lodge under the retina. Early investigations
    suggest that these deposits might be a precursor to AMD, and
    this hypothesis is undergoing careful study to determine if
    drusen play a role in the development of macular degeneration.
        Other approaches to solving the problem of AMD include
    laboratory, or basic, research. This research includes studies
    of genetic factors to gauge the role of heredity in the
    development of AMD. Genes involved in AMD already have been
    identified in three less common types of macular degeneration.
    In addition, genes associated with several other forms of
    macular degeneration have been localized to specific
    chromosomes. Knowing the genes will enable researchers to
    determine the gene product and how it brings about the
    degeneration.
        NEI scientists also are trying to identify genes that could
    help regenerate damaged areas of the retina. This strategy may
    help to prevent much of the visual loss from later stages of
    AMD. Researchers are exploring the effects that gene
    replacement therapy may have on the treatment of macular
    degeneration, and scientists have already successfully placed
    genes into the retina of laboratory animals. Replacing diseased
    retinal cells with healthy ones is another promising area of
    research. NEI scientists are working to apply retinal cell
    transplants to treat retinal degeneration caused by AMD.
        The NEI also sponsored a workshop that led to shared
    research ideas and consideration of the future direction of AMD
    research. This workshop, held last June, brought together
    academicians, clinicians, and representatives from
    biotechnology companies, all of whom were knowledgeable in
    growth factor cell biology. The discussion centered around the
    potential use of neurotrophins, or biological survival factors,
    to delay clinical indications of retinal cell degeneration in
    AMD and other eye diseases.
        In addition to being a leading cause of blindness in the
    United States, AMD is also a leading cause of low vision,
    broadly defined as a visual impairment interfering with an
    individual's ability to perform activities of daily living.
    There are approximately three million Americans who suffer from
    visual conditions that are not correctable by standard glasses
    or contact lenses. People with low vision often cannot perform
    daily routine activities, such as reading the newspaper,
    preparing meals, or recognizing faces of friends.
        As the leading source of vision research funds in the
    United States, the NEI is committed to furthering progress in
    the area of low vision research. During 1996, the NEI supported
    18 extramural research projects related to low vision. In
    addition, the NEI, through the National Eye Health Education
    Program, is developing an education program aimed at addressing
    the needs of people with low vision. This new program will
    increase public awareness about the impact of low vision on
    daily living. Approximately 21 percent of those who have low
    vision and are aged 45 and older are unfamiliar with low vision
    clinical services. The low vision program will play a key role
    in informing Americans about the use of optical and adaptive
    low vision devices and services.
        The NEI has been very active in pursuing treatments for a
    wide spectrum of eye diseases, including those affecting the
    youngest Americans. Last year we confirmed that a freezing
    treatment helps save the sight of premature babies with a
    potentially blinding condition called retinopathy of
    prematurity. After 5\1/2\ years of follow-up, this treatment
    increased the possibility of saving sight in affected eyes by
    about 24 percent. These results present solid evidence that
    this freezing treatment significantly reduces the number of
    infants who are blinded by retinopathy of prematurity.
        NEI's fight against uveitis, a severe inflammation in the
    eye, is continuing. Uveitis causes about 10 percent of the
    severe visual impairment in the United States, and affects
    primarily children and young adults. Treatment of uveitis has
    usually revolved around potent drugs that block the immune
    system. In a recent intramural NEI study, we found that when a
    purified protein is fed to patients suffering from uveitis,
    they were able to be weaned off the strong drugs, with no
    negative side effects. A larger, more focused clinical trial is
    underway.
        The NEI is also studying the effect of apoptosis, or ``cell
    suicide,'' in retinal degeneration. Apoptosis is a controlled,
    orderly process by which the body eliminates unwanted cells; it
    is a mechanism to eliminate damaged cells, without harming
    healthier neighbors. Apoptosis appears to play a role in
    several retinal degenerative diseases. By understanding the
    process by which this programmed cell death occurs, scientists
    may be able to develop a method to inhibit the process and thus
    treat these diseases.
        The NEI also is active in the area of cell rescue and
    regeneration. Severed nerve cells in the peripheral nervous
    system can survive and regenerate to some extent, but most
    central nervous system nerve cells do not. For years
    researchers have been trying to determine the basis for this
    difference, so that damage to either system could be repaired.
    Recent research on the development of the visual system
    indicates that the signals that promote the survival and growth
    of neurons in the central nervous system and peripheral nervous
    system may differ significantly. Studies have demonstrated that
    specialized nerve cells in the retina that are similar to brain
    cells, including those cells in the spinal cord, do not survive
    in a serum-free culture medium. However, these cells do survive
    in culture when the medium contains the required combination of
    growth factors and other constituents. Related experiments in
    animals show that the survival of these specialized retinal
    cells after damage is significantly increased by injection of
    these factors into the eye. These findings demonstrate that the
    retinal nerve cells have similar survival requirements in the
    living organism and in the test tube, suggesting central
    nervous system neurons can be rescued by activating the
    appropriate signaling pathways.
        As the NEI continues its research, it is becoming apparent
    that many eye diseases and disorders share common denominators.
    For example, new blood vessel growth in the retina is
    associated with both diabetic retinopathy and age-related
    macular degeneration. The NEI is looking at the way these
    pathologic processes cut across many diseases and can be
    controlled by blocking new blood vessel growth.
        Our investment in high quality clinical research has little
    real benefit unless the results and recommendations from such
    studies are widely and suitably incorporated into patient care.
    Results of research must be disseminated to the public so
    people can take more proactive approaches to ensure their own
    health. One way this happens is through the National Eye Health
    Education Program (NEHEP), which is playing a role in educating
    Americans on the early detection and treatment of eye disease.
    For the past three years the National Eye Institute, through
    the NEHEP, has joined forces with the American Diabetes
    Association to make diabetic eye disease the major focus of
    National Diabetes Month activities, held in November. Through
    this successful public-private partnership, 11 organizations
    have disseminated important information to the 16 million
    Americans with diabetes and conducted community activities
    nationwide that emphasized the importance of an annual dilated
    eye examination. A related media campaign focusing on the
    connection between diabetes and eye care reached over 80
    million people.
        NEI's research program does more than fight eye disease, it
    also helps inventors with ideas on low vision aids develop
    those ideas for the marketplace. Inventors have few resources
    available allowing them to develop products that help people
    suffering from low vision. NEI's Small Business Innovation
    Research Grants Program gives inventors the opportunity to see
    their ideas turned into reality. For example, through this
    program, telescopic systems were developed that help those with
    low vision perform common tasks, such as walking down the
    street or reading signs. Another idea, a system called
    ``Outspoken,'' magnifies text on a computer screen, making it
    easier for people with low vision to read. This product was
    recognized by the Smithsonian Institution for its unique way of
    using technology for the common good. A sister program, called
    the Small Business Technology Transfer Grant, encourages
    inventors in universities or research centers to form
    partnerships with small businesses. Between both programs, NEI
    expects to fund approximately 50 projects this fiscal year.
        Mr. Chairman, the fiscal year 1998 budget request for the
    National Eye Institute is $330,955,000. I will be happy to
    answer your questions.

                     summary statement of dr. richard hodes

        Senator Specter. We now turn to Dr. Hodes, Director of the
    National Institute on Aging, can you tell us your budget for
    this year and your proposed budget for next year?
        Dr. Hodes. The budget for this year, Mr. Chairman, is
    $483.952 million. The proposed budget is $495.202 million.
        Senator Specter. And if your budget were to be doubled,
    what would you anticipate being able to accomplish?
        Dr. Hodes. One of the National Institute on Aging's areas
    of emphasis is that which you mentioned earlier in your own
    remarks, Alzheimer's disease. Its urgency is put in the context
    of the changing age profile of the American population, in
    which particularly, the oldest old population will be
    increasing at a great rate over the next decades. This takes on
    relevance for all age-related disease, Alzheimer's disease
    among them, where studies have shown that percentages as high
    as 47 percent, or nearly one-half of those individuals age 85
    and older, are affected.
        With an increase in resources we would increase our efforts
    from the most basic level, to try to unravel the molecular
    basis of disease, an area where enormous progress has been made
    in terms of defining genes which are risk factors for
    Alzheimer's, as well as translating that information into
    development of new therapies. There has also been progress over
    the last years in identifying risk factors from epidemiologic
    studies. At present, the confluence of these epidemiologic, or
    risk factor studies, together with basic science, has brought
    us to the point of readiness for clinical trials of currently
    available and evolving agents.
        Senator Specter. What is the reality, Dr. Hodes, of being
    able to find the cause and cure for Alzheimer's?
        Dr. Hodes. I think the reality is that eventually the cause
    or multiple causes will be found. The pace of progress,
    identifying mutations and individual genes, which cause
    inheritable disease, is symbolic of the way in which we are
    understanding the molecular pathways involved in Alzheimer's
    disease.
        However, the complete translation of this into therapies
    and interventions is a task which is still formidable and
    should not be underestimated. In the interim, even prior to
    having this complete molecular understanding, there are data
    coming from risk factor analysis, which have suggested that
    histories, for example, of use of anti-inflammatory drugs, or
    history of estrogen use in women has very substantial effects
    on the risk of Alzheimer's development. These are epidemiologic
    studies. They do not demonstrate directly the ability of these
    agents to act as therapeutic agents, but they are compelling
    evidence, provoking the initiation of such therapeutic studies,
    some of which are in progress and others of which are in the
    planning stages.
        Senator Specter. Well, when the layman asks what are the
    prospects for finding the answer to Alzheimer's and some
    projection as to time, is it realistic, from your point of
    view, to give a projection as to how long it might take?
        Dr. Hodes. I think that it is wise to be most cautious in
    making promises that specify years. I think it is likely that
    over the course of the next 5 years that the time span of
    clinical studies now in progress and at planning stage have the
    potential to determine the effectiveness of treatments which
    are promising on the basis of basic science and epidemiologic
    analysis. I think that is a timeframe over which we will have
    the next answer to the effectiveness of the next generation of
    therapeutic agents.
        Senator Specter. Well, if that answer is positive, what
    impact does that have on curing Alzheimer's?
        Dr. Hodes. I think, again, one has to be cautious about the
    use of the term ``cure.'' What we have learned already about
    Alzheimer's is the multiplicity of factors which contribute to
    it. We are working to identify risk factors which, as suggested
    by certain epidemiologic studies may be able to reduce the risk
    of Alzheimer's by as much as 40 or 50 percent, if properly
    addressed. If that risk factor analysis were to be translated
    into actual effectiveness for therapeutic intervention, even if
    we had not yet understood the entire molecular etiology of
    disease and prevented it in absoluteness, there would be
    clearly an enormous public health and human impact upon
    Alzheimer's.
        Senator Specter. Well, I understand the difficulties of
    being more precise. To the extent that it is possible to give
    some projected timetable, albeit tentative or albeit
    speculative, it would be enormously helpful. I have seen some
    statistics on Alzheimer's, for example, which say that if you
    delay the onset of Alzheimer's by 5 years, you save $40
    billion. Is that figure accurate or in the ballpark, Doctor?
        Dr. Hodes. I think it is clear, because of the late onset
    of disease, that if a 5-year delay in Alzheimer's should be
    accomplished, that there would be an enormous savings. I would
    certainly stop short of a precise dollar figure, but as a
    ballpark in order of magnitude, I think indeed it is reflective
    of the enormous savings that would result from that kind of
    delay.
        Senator Specter. Well, when you submit followup answers to
    the subcommittee, to the extent you can quantify savings, it
    would be helpful. I know it is not possible to do it with
    precision, but when we are talking to the American people about
    the importance of the research it is very hard to give them a
    feel for if it cannot be quantified to some greater extent.

                       summary statement of dr. zach hall

        Let me turn now to Dr. Hall, neurological disorders. We had
    Christopher Reeve in last week, and Christopher Reeve talks
    about a doubling of the budget and a solution to the issue of
    severing the spinal cord. And of course, when Christopher Reeve
    testifies, there is an enormous amount of attention paid. What
    is the reality of finding an answer to spinal cord
    regeneration, to the extent you can answer that?
        Dr. Hall. Let me begin by saying that the problem of
    regeneration after spinal cord injury is one of the most
    difficult that we face. The spinal cord carries literally
    millions of nerve fibers that exert control of the brain over
    our movements and, in contrast, also bring in sensations and
    information to the brain. To try to reestablish that wiring is
    a major challenge.
        We are, however, making progress. And I think it is
    important to say that we do not have to completely be able to
    regenerate the spinal cord in order to provide substantial
    benefit for patients, people such as Mr. Reeve, who have spinal
    cord injury. Even a 5- or 10-percent increase in function can
    make an enormous difference in the quality of life for these
    people.
        What we have found is that one of the major factors
    inhibiting regeneration in the spinal cord is that--two things.
    There are agents that promote growth of nerve fibers and there
    are agents that inhibit it. We know that the central nervous
    system, which traditionally does not allow regeneration, is a
    nonpermissive environment normally for nerve regrowth. And what
    we are beginning to learn how to do is how to manipulate that
    environment in order to remove the inhibitory influences and to
    add influences that stimulate nerve growth.
        There have been some very promising early experiments in
    rat spinal cord injury, which suggests that limited regrowth is
    possible. And we are keenly interested in that and wish to push
    that work ahead as quickly as possible.
        The major areas that we are interested in are understanding
    the injury that occurs, promoting regrowth, trying to increase
    the insulation of those newly regrown fibers, and our Institute
    also has a large program in providing help for patients with
    spinal cord injury. One of the recent triumphs, for example, is
    a device which lets patients with certain kinds of injury hold
    a glass or hold a pen or use their hands by movements of their
    shoulder muscles.

                               prepared statement

        And I cannot tell you what a tremendous improvement in just
    being able to manipulate one's way through daily activities,
    being able to hold a glass or hold a fork and to move that,
    involves. And so we are working, then, both in terms of trying
    to increase regeneration, prevent damage and also trying to
    devise mechanisms and devices that will restore some function
    to people with these injuries.
        Senator Specter. Thank you.
        [The statement follows:]
                     Prepared Statement of Dr. Zach W. Hall
        Mr. Chairman and committee members: Thank you for the opportunity
    to appear before this Committee. These appearances are a pleasure for
    me because we are in an era of unprecedented progress in research on
    the brain and its diseases, and I appreciate the opportunity to share
    with you some of the important advances of the last year. There is a
    growing awareness of the importance of diseases of the brain in our
    society. In part this arises because our population is aging, and
    diseases of the brain become more prevalent as one gets older. In part
    it is also due to the growing awareness of the importance of the
    nervous system for many problems that have not traditionally been
    considered as biologically based diseases, conditions such as autism or
    addiction or Tourette's syndrome. We share responsibility for brain
    research with a number of other Institutes and Centers at NIH, and we
    cooperate with them in areas of mutual research interest, including
    pain, sleep disorders, and neurological aspects of AIDS. Our own
    Institute has responsibility for more than 600 neurological disorders,
    ranging from those well-known, such as stroke, Parkinson's disease and
    epilepsy, affecting millions of Americans, to those less common, such
    as Batten disease, Friedreich's ataxia and ataxia-telangiectasia, that
    may affect a only few hundred Americans, but are nevertheless
    devastating to the patients and their families.
        These are exciting times in research on neurological disease, as we
    stand on the threshold of an era in which the treatment of brain
    disease will become not just a promise, but a reality. In the past, we
    have had few treatments to offer patients with brain disease. When I
    was in medical school and became interested in neurological disease, I
    was told by my advisors that if I was interested in the intellectual
    challenge of diagnosis, neurology was a wonderful specialty, but if I
    wanted to make patients well, I should look for something else.
    Fortunately, that distressing situation is about to change. As we make
    progress in understanding the mechanisms at work in brain disease, as
    we identify genes that cause or predispose to brain disease, as we
    understand more about how the normal brain works, we are better able to
    devise treatments to prevent, slow or stop the disease process. Today,
    I want to tell you about our progress in three important disease areas:
    stroke, Parkinson's disease and spinal cord injury.
                                     stroke
        Stroke is a major health problem in the United States; 500,000
    Americans have a stroke each year; of these approximately 150,000 die.
    Those who survive are often left with major disability, at great
    emotional and financial cost to their families and to our society. Last
    year at this time I reported that NINDS, working with leading
    investigators across the country, with the private sector, and with the
    patient community, had organized a clinical trial showing for the first
    time that prompt administration of a clot-buster to those with the most
    common form of stroke gives a 30-percent increase in the chance for
    full recovery. This finding heralds a new era in stroke medicine, by
    showing that acute treatment can be effective.
        Widespread use of the new treatment will not follow automatically,
    however, because to be effective, therapy must be delivered within
    three hours after symptoms first appear. To insure such prompt
    treatment requires that physicians, patients and their families be
    educated, and that paramedics and hospital personnel be organized to
    give urgent care. Our clinical trial provided a model for this change
    by showing that a rapid response could be organized in a variety of
    health care and emergency settings. To help bring about the change,
    NINDS convened a major symposium involving doctors, nurses, paramedics,
    and patient representatives, to provide guidance for health care
    providers implementing acute stroke therapy. We will continue to work
    with patient and professional organizations to publicize the results of
    the symposium, helping public and health care professionals organize
    acute stroke treatment in a variety of settings.
                              parkinson's disease
        Parkinson's disease (PD), which usually strikes in late middle age
    and affects more than a half million Americans, impairs control of
    movement, progressing from symptoms such as tremor and muscular
    rigidity to total disability and death. Parkinson's disease, like
    Alzheimer's disease, amyotrophic lateral sclerosis (ALS), and
    Huntington's disease, is a neurodegenerative disease with an unknown
    cause.
      --In 1995 NINDS and three other institutes sponsored a Parkinson's
            Disease Research Planning Workshop to identify new directions
            of research. A major conclusion of the Workshop was that PD
            likely has a large genetic component. In response, NINDS
            initiated a collaboration with the National Human Genome
            Research Institute and extramural researchers which quickly
            showed that in a single large family PD was caused by an
            alteration in a gene on chromosome 4. This discovery was
            published in last November's issue of the journal, Science.
        Current investigations are aimed at identifying the gene and
            determining whether genetic alterations would benefit patients.
            Most importantly, identification of the genes responsible for
            familial Parkinson's disease may help solve the mystery of what
            triggers the degenerative processes in both familial and non-
            familial Parkinson's disease and provides the tools for testing
            new treatments. As a result of the 1995 Workshop, NINDS also
            issued a program announcement calling for applications on the
            mechanisms of cell death and injury in neurodegenerative
            disorders including PD, jointly sponsored by the National
            Institute on Aging, the National Institute of Environmental
            Health Sciences, and the National Institute of Mental Health.
      --Clinical trials are underway to evaluate a surgical technique
            called pallidotomy to treat PD. Other trials are investigating
            the use of nervous system tissue implanted into the brain to
            halt or delay the process of degeneration, and to evaluate
            improved drug therapy for people with advanced PD.
      --Trophic, or nurturing, factors are important for the survival of
            neurons in the growing brain and are essential for a healthy
            nervous system in adults. Promising results using trophic
            factors as therapies for PD have now been extended to primate
            models. Further research is required to overcome obstacles to
            human administration.
                               spinal cord injury
        One reason trauma to the central nervous system has such severe
    consequences is that neurons in the brain and spinal cord fail to
    regenerate after damage. Now we know they make unsuccessful attempts to
    regenerate, and in some circumstances can be coaxed to regrow. In 1996,
    NINDS with other NIH components sponsored a major workshop to foster
    new ideas and collaborations. Following that meeting, NINDS issued a
    program announcement to encourage research in several areas with
    potential for success:
      --Neuroprosthetic devices connect with the nervous system via
            electrodes to stimulate muscles or provide sensory input. For
            example, a neural prosthesis developed with NINDS support and
            recently recommended for approval by an FDA advisory panel
            restores significant hand function to quadriplegics. Realistic
            future targets include a splint-free system to allow a
            paraplegic person to rise, stand, and sit again without
            assistance, and technologies to control muscles using direct
            brain signals.
      --High dose methylprednisolone, the first therapy to improve the
            outcome of spinal cord injury, is now regularly used in
            emergency rooms. The effects of longer methyl-prednisolone
            treatment and of a new class of cortico-steroid drugs are now
            being studied.
      --Efforts to repair damaged spinal cords in animals are continuing,
            using grafts, nerve bridges, cell implants, cell survival
            factors, antibodies, and genetic engineering. An NINDS grantee
            in Sweden has been able to use nerve grafts successfully in
            animals to bridge gaps in injured spinal cords. The potential
            use of newly-discovered neural progenitor cells, nerve cells
            that may have the capacity to replace cells lost because of
            trauma, is also under investigation.
                             diseases of childhood
        More than a third of all genetic disorders affect the nervous
    system, and hundreds affect infants and children. In the past several
    years, research has rapidly progressed in identifying genes for a
    number of brain disorders. Approximately 50 genes have been identified.
    Finding the defective gene that causes a disease is only a beginning
    towards developing a therapy, but it allows scientists to develop
    diagnostic tests, create animal models, learn how the gene and its
    protein function to promote health or disease, and pursue a reasoned
    strategy towards counteracting the defect. Examples of progress in
    understanding neurogenetic disorders of infancy and childhood include:
      --In neurofibromatosis 1, a common hereditary disorder of the nervous
            system, tumors, called neurofibromas, develop along nerves.
            Most of these tumors are benign but some become malignant. A
            defective NF1 gene results in the disease, and the normal gene
            is thought to be a tumor suppressor. This is an important clue
            to tumor formation in NF and perhaps will help predict which
            tumors will progress to malignancy, a valuable tool for
            planning surgery or other treatments.
      --Recently scientists discovered that a defect in a gene for a
            previously unknown protein causes Friedreich's ataxia, a
            neurodegenerative disease of childhood. This should lead to a
            test for screening carriers of the gene and also to effective
            treatments.
      --Turner syndrome, a genetic disorder of the X chromosome causing a
            lack of sexual development and a variety of cognitive and motor
            deficiencies, occurs in about 1 of every 3000 live-born
            females. Ongoing clinical trials are examining the effects of
            estrogen and androgen on cognition and social development.
            Besides providing information about the effectiveness of
            hormone replacement therapies for girls with Turner syndrome,
            these studies present a unique opportunity to study the effects
            of hormones on brain development and function, with
            implications for children's and women's health.
        Last year we reported exciting evidence that the administration of
    magnesium sulfate to mothers at risk for premature delivery was
    associated with a reduced risk of cerebral palsy in their infants. Now,
    NINDS is collaborating with the National Institute of Child Health and
    Human Development on a prospective clinical trial designed to validate
    this finding. In another study published in 1996, NINDS-funded
    researchers linked low levels of the hormone thyroxin in premature
    infants to cerebral palsy, suggesting another avenue for preventing
    this disabling illness.
                                future research
        Despite the astonishing progress of neuroscience, there is much we
    do not understand about the brain. Continued support of fundamental
    neuroscience research will undoubtedly yield important insights.
    Progress in molecular biology, genetics, imaging, and other areas has
    accelerated the flow of knowledge between basic and clinical
    neuroscience. NINDS is taking steps to enhance the Institute's ability
    to respond to emerging clinical research opportunities. While relying
    primarily on investigator-initiated ideas and peer review to ensure the
    best quality science, the Institute uses other important tools for
    stimulating research. In fiscal year 1996 NINDS solicited new research
    proposals from extramural investigators in the genetics of Parkinson's
    disease, mechanisms of cell death and injury in neurodegenerative
    disorders, Batten disease, immune system mediated diseases, central
    nervous system injury, and the effect of HIV in the brain. NINDS
    additionally organizes and funds workshops either directly, as in the
    case of recent workshops on Parkinson's disease and spinal cord injury,
    or through grants to investigators or organizations. The Institute will
    continue to take appropriate active steps to stimulate submission of
    research ideas in areas identified as high priority and to participate
    in the NIH special emphasis areas: Biology of Brain Disorders,
    Preventive Strategies, Therapeutics/Drug Development, and Genetics of
    Medicine.
        Mr. Chairman, the fiscal year 1998 budget request for this
    Institute is $722,712,000. I would be pleased to answer any questions
    you might have.

                     summary statement of dr. william paul

        Senator Specter. Dr. Paul, Office of AIDS Research, what is
    your budget for last year and what do you project for next
    year?
        Dr. Paul. Mr. Chairman, our budget for this fiscal year is
    $1.501 billion and the request for fiscal year 1998 is $1.54
    billion, an increase of approximately $39 million.
        Senator Specter. What could you accomplish with a doubling
    of your budget, Dr. Paul?
        Dr. Paul. As you probably know, Mr. Chairman, we have
    recently conducted an extensive review of our program and
    attempted to identify those areas of greatest need and greatest
    scientific promise. That group's advice and our own knowledge
    of the area as well, strongly pointed to the need to make major
    investments in efforts to prevent transmission of HIV by two
    main mechanisms: the development of a preventive vaccine, which
    is currently receiving the greatest emphasis and, second, the
    implementation and development of other techniques to allow
    people to avoid HIV infection.
        Senator Specter. A preventive vaccine?
        Dr. Paul. We certainly regard a preventive vaccine as----
        Senator Specter. Whom would that be administered to?
        Dr. Paul. Initially, the target population would be very
    much dependent on the nature of the actual vaccine that is
    developed. A vaccine of great power, with very limited side
    effect, I think would probably be targeted to a very wide
    population. By contrast, the vaccine that might have some risk
    associated with it would obviously be targeted to those
    individuals of greatest risk of disease.
        Senator Specter. How far along are you on developing such a
    vaccine?
        Dr. Paul. Well, the NIH has made vaccine development an
    important priority for some time, but within the last 2 years
    the rate of our increase of investment has been very
    substantial. As you know, the President has challenged us to
    accomplish this within a decade. And my colleagues and I at NIH
    and throughout the Nation are working very hard to try to meet
    that challenge. It is a very formidable challenge, but we do
    hope we can report a degree of success within that period of
    time.
        Senator Specter. Is it not possible to answer the question,
    how far along you are?
        Dr. Paul. Yes; we have several vaccine candidates, one of
    which is in phase 2 trials at this time. That candidate is the
    so-called prime boost mechanism. We will know the results of
    the phase 2 trials approximately within a year. If those trials
    are promising--and I must argue we cannot determine that in
    advance--we would then move to efficacy trials that would
    begin, I would say, within a period of about 18 months, and
    would take approximately 2 to 3 years to complete.
        Senator Specter. Dr. Paul, what response would you
    recommend that we give when people say that the allocation of
    Federal funds for AIDS is very disproportionate to the number
    of people involved, contrasted with other major ailments?
        Dr. Paul. This is a question of course which I understand
    that people are quite concerned about. Our position on this,
    and I think the Nation's position, is that we are dealing here
    with a new infectious agent, an agent which has only appeared
    in large human populations within the past 20 years. We are
    facing an entirely different situation than we do for measles,
    for influenza, for other viruses.
        This virus has already become the leading cause of death of
    young adults in the United States, and will shortly be the
    leading infectious cause of death in the world. What we are
    particularly concerned about, however, is as this virus
    epidemic moves throughout the world, the virus will continue to
    evolve. And the form it will take is still unpredictable.
        While we have an enormous epidemic today and one we need to
    meet immediately, we have the concern that we may face a more
    serious problem in the future. So that unless we use this
    window of opportunity that we have now, we may discover that
    our children and grandchildren are faced with an even more
    severe challenge.

                               prepared statement

        So it is our position that HIV and AIDS constitutes an
    unusual problem, one that is not easily quantifiable based
    simply on the number of infected individuals in the United
    States today, but one whose threat to us is based on its
    potential for damage. It seems to us we need to respond and
    meet that potential today.
        Senator Specter. Thank you very much.
        [The statement follows:]

                   Prepared Statement of Dr. William E. Paul

        Mr. Chairman, this has been a year of progress and promise
    in AIDS research, a year clearly demonstrating the dividends
    made possible by our national investment in biomedical science.
    So striking was this progress that Science Magazine named the
    ``New Weapons Against HIV'' as the breakthrough of the year,
    and Time Magazine named Dr. David Ho, an NIH-supported
    investigator and a member of our OAR Advisory Council, as its
    Man of the Year, the first time a scientist has been so honored
    since 1960.
        After many years of slow and incremental advances against a
    relentless epidemic, we can take collective pride in the
    dramatic changes that have occurred just since our hearings
    here last year. Protease inhibitors, a new class of drugs, used
    in combination ``cocktails'' with other antiretroviral
    therapies, have been shown to dramatically diminish the amount
    of HIV in the blood of an infected individual. Receptors for
    molecules called chemokines have been identified as critical
    co-factors for HIV infection. Individuals who have defects in
    one set of these receptors are protected from HIV-infection
    despite exposure to the virus. These findings provide an
    entirely new approach for the development of anti-HIV
    therapies.
        These critical advances have brought a sense of hope and
    renewed vigor to the AIDS research community and to our
    patients. But it is essential to point out that the news, while
    good, cannot lead to complacency. The covers of some magazines
    may fantasize about the ``end of AIDS,'' but, Mr. Chairman, the
    end of this pandemic is nowhere in sight.
        The new drugs, while promising, are not a panacea. We do
    not know how long the benefits of the drugs will last, whether
    the virus will become resistant to the drugs, or whether such
    drug-resistant strains of the virus could be transmitted. It is
    far from clear that immune function of treated individuals will
    be restored without additional intervention. There are many
    people for whom the new drug regimens have not been effective
    or for whom the side-effects are not tolerable. Access to and
    affordability of the therapies is also problematic. Although
    the virus has been brought to undetectable levels in the blood
    and in some lymphoid tissues, it is still not known whether
    there are other sanctuaries where the virus may reside in the
    body.
        The sobering fact is that we have made virtually no
    progress against the devastating spread of the epidemic around
    the globe. AIDS is the number one cause of death among young
    adults in the United States. Rates of increases in AIDS cases
    in the U.S. are greatest for women, adolescents, persons
    infected through heterosexual contact, minorities, and
    injecting drug users. More than 29 million men, women, and
    children around the world have been infected with HIV; over 3
    million of those infections occurred in just the past year.
    More than 90 percent of these infections occur in the poorest
    parts of the world, in countries without the resources or the
    health care systems to benefit from our successes in the
    development of anti-HIV drugs. AIDS has brought about a
    significant decline in overall life expectancy in many African
    countries, threatening the economies of these already poor
    nations and robbing them of their workforce. A safe and
    effective AIDS vaccine is an urgent global public health
    imperative. Without a vaccine, AIDS will soon overtake
    tuberculosis as the leading infectious cause of death in the
    world. Thus, we can take no solace from our advances nor can we
    diminish our urgent search for better therapies and for a
    protective vaccine.
        Three years ago, the prospects in AIDS research appeared
    dim. The International AIDS Conference in Berlin left many
    scientists and patients dismayed. After the initial burst of
    knowledge about the virus and development of the original
    reverse transcriptase inhibitors, progress had slowed, and the
    pipeline of new potential drugs or vaccines seemed empty. The
    OAR convened a small group of eminent scientists, including a
    number of Nobel Laureates. We asked them to help us identify
    the critical gaps in our knowledge about AIDS and to suggest
    what steps could be taken to open new scientific opportunities
    and move the science forward.
        That meeting was held at the Stone House of the Fogarty
    International Center, and has proven to be a pivotal moment for
    AIDS research. At the meeting, the late Dr. Bernard Fields
    stated his firm conviction that further advances against the
    virus would require the NIH to shift its priorities and its
    resources to bring about what he termed a ``rededication to
    fundamental science.'' Without this basic knowledge, the
    pipeline would remain empty.
        The OAR examined all NIH AIDS research funding to determine
    the best way to bring about this rededication to fundamental
    science. In every budget since that year, we have increased the
    proportion of funding for basic research. The OAR has placed
    greater emphasis on investigator-initiated science, increasing
    the number of research grants by 50 percent between fiscal year
    1994 and this fiscal year 1998 request. This has encouraged
    innovation from a wider group of investigators.
        Another important initiative emerged from the ``Stone
    House'' meeting. Dr. Phillip Sharp, a Nobel Prize winner,
    presented the idea that in order to plot a course for the
    future, we needed to understand all of the facets of the
    existing AIDS research program, which by then already had
    spanned all of the NIH institutes and centers. He suggested
    that a critical evaluation of the entire program was necessary,
    to assure that the most promising areas of science are being
    supported, that the critical scientific questions are being
    addressed, and that the most effective use is being made of
    federal AIDS research resources.
        As you know, that discussion led to the evaluation of the
    entire AIDS research program, a review of unprecedented scope
    and breadth, lead by Dr. Arnold Levine of Princeton University.
    The report of that review, commonly known as the Levine Report,
    has provided guidance to the NIH for strengthening our AIDS
    research program to move more effectively and efficiently
    toward our goal of preventing and curing AIDS. This report is
    not sitting on a shelf gathering dust. The recommendations
    helped frame the OAR's final distribution of the fiscal year
    1997 appropriation, and are reflected in our research plan and
    budget request for fiscal year 1998. An implementation process
    is underway. I would like to update you on some of the changes
    that have already occurred.
        The highest recommendation of the Levine Report confirmed
    what OAR had already set in place, that is, the need to
    increase investigator-initiated research. The report also
    recognized that only a truly effective preventive anti-HIV
    vaccine can limit and eventually eliminate the threat of AIDS.
    Thus, the next priority of the reviewers was the need to
    restructure and reinvigorate the AIDS vaccine program, with
    leadership and guidance from eminent non-government scientists.
        We have taken two important steps to carry out this
    critical recommendation. Nobel Laureate Dr. David Baltimore has
    been recruited to lead this effort, and he has gathered a group
    of outstanding scientists to serve with him. Their charge is to
    stimulate the integration of basic research advances in
    immunology and vaccine science to energize the development of
    new HIV vaccine strategies. To facilitate this effort, OAR has
    made a major financial investment in AIDS vaccine research. The
    fiscal year 1998 budget request represents a 33.6-percent
    increase for vaccine research over fiscal year 1996, a sign of
    our commitment to this effort. The President also highlighted
    the importance of this effort in his State of the Union
    address.
        Some have argued that a protective anti-HIV vaccine is
    simply not possible because of the variability among the
    viruses that are being transmitted in any given population,
    because of the high mutation rate of the virus, and because the
    principal cells that are infected are themselves essential to a
    highly effective immune response. But, as an immunologist, I
    believe there is persuasive evidence that a protective immune
    response can be induced and that an effective vaccine is
    possible. I also believe that the government has a unique role
    and obligation to support the basic research needed for the
    development of a successful vaccine.
        The Levine Report stresses the need for greater emphasis on
    prevention of HIV infection. In addition to a stronger vaccine
    research effort, the report urged NIH to develop a Prevention
    Science Agenda combining biomedical interventions--such as
    microbicides, female-controlled barriers, methods to prevent
    mother-to-child transmission, and STD prevention and
    treatment--with behavioral interventions. OAR convened a group
    of experts, chaired by Dr. James Curran of Emory University, to
    assist us in identifying the most promising areas for
    additional investment. OAR will provide additional resources to
    the institutes to fund proposals devoted to HIV prevention.
        With these actions, OAR believes that the necessary balance
    has been established between research to develop treatments for
    those who are infected and to develop vaccines and other
    prevention methods for those who are at risk. This balance is a
    delicate one, and may shift as science progresses.
        Thus, the fiscal year 1998 budget request for AIDS research
    has been crafted to reflect the recommendations of the Levine
    Report and the broad consensus on the current scientific
    opportunities. The scientific priorities that have framed this
    request are:
      --A rededication to fundamental science, emphasizing investigator-
            initiated research;
      --A stronger vaccine research and development effort with the goal of
            bringing products to clinical trials as soon as warranted;
      --An augmentation of research efforts to better understand the human
            immune system;
      --An emphasis on prevention science research, including enhanced
            studies of risk-taking behavior and the development of
            strategies to avert infection; and
      --A vigorous therapeutic research program, emphasizing both drug
            discovery and an efficient clinical trials system, with
            additional emphasis on increased participation of women and
            minorities.
        Mr. Chairman, we are reaping the rewards of years of work by
    dedicated scientists. Those who met at the Stone House set a new course
    for AIDS research, building a stronger foundation of basic science and
    relying on the ingenuity and creativity of investigators. Following
    that course, we have gained new knowledge of the basic biology of HIV
    and developed new targets for therapies and vaccine development. But we
    cannot diminish our efforts, for we are just beginning to unlock the
    mysteries of this disease. The science of AIDS is moving forward and
    opening whole new areas of research that can advance the treatment and
    prevention not only of AIDS, but of a vast number of other diseases as
    well.
        The Office of AIDS Research requests a consolidated appropriation
    of $1,540,765,000 for NIH AIDS research through the OAR. The budget
    authorities provided to the Office of AIDS Research, allowing us to
    make resources available where the greatest opportunities lie, are even
    more critical today as the scientific opportunities are constantly
    changing. We are grateful to the Committee for your continued support
    for AIDS research and for providing us the flexibility critical to
    meeting these enormous scientific challenges. I would be pleased to
    answer any questions.

                    summary statement of dr. francis collins

        Senator Specter. Dr. Collins, Director, National Human
    Genome Research Institute, what is the down side, if any, to
    the proposals to prevent cloning of humans? To what extent
    would that impact on your general research?
        Dr. Collins. I suspect Dr. Varmus may want to comment as
    well, but I will start out. I think statements that were made
    this week with the release of the National Bioethics Advisory
    Commission's recommendations were quite careful to point out
    that the cloning of genes and of cells is a very different
    thing than the cloning of a human being. The human genome
    project is very dependent on the cloning of genes. In fact, the
    project is intended to determine the entire genetic blueprint
    of human beings by the year 2005. And I am glad to say we are
    running ahead of that schedule at the present time and have now
    begun to ramp up seriously into the sequencing part.
        Were this anxiety, which I understand, about human cloning
    to spill over into an anxiety about that same word,
    ``cloning,'' being applied to genes, it would be an enormous
    tragedy for America, for the public, for the biotechnology
    sector, for the NIH, for all of us. So we have to be quite
    careful about what it is we are discussing.
        When it comes to the cloning of genes or the cloning of
    cells--that is, a copying of a gene or a cell that is growing
    in a laboratory--the ethical issues have been dealt with quite
    successfully and broadly over the course of the last several
    decades. And the arrival of Dolly on the scene should not cause
    us to become anxious about those biotechnology aspects of
    recombinant DNA that involve cloning of genes.

                               prepared statement

        The short answer to your question is that human cloning,
    while it is a fascinating topic, is really quite different than
    what the human genome project is all about.
        [The statement follows:]
                                    ------

                  Prepared Statement of Dr. Francis S. Collins

        Mr. Chairman, it is truly an exciting opportunity to
    testify before you today, for the first time, as director of
    the NIH's newest research Institute, the National Human Genome
    Research Institute (NHGRI). On January 14, after consultation
    with you and other Congressional leaders, Secretary Shalala
    signed documents that gave the National Center for Human Genome
    Research (NCHGR) a new name and new status. We are proud the
    NCHGR has been recognized for its successful leadership of the
    Human Genome Project, the accomplishments of its cutting-edge
    intramural laboratories, and its active policy research
    programs. As an Institute, NHGRI looks ahead to completing the
    Human Genome Project and to playing a leading role in 21st-
    century health science based on understanding the instructions
    encoded in our DNA.
        As in the past, we continue to make remarkable strides
    toward our goals, and in the process, spin off new ways to
    approach the study of genetic disease. The genetic maps are
    complete, the physical maps nearly so, and both are in wide use
    by the scientific community. The slowest part of a disease-gene
    hunt nowadays is sorting through all the genes in the target
    region on a chromosome and determining which one is responsible
    for the disease. To help solve this, scientists at NHGRI-
    supported research centers, the National Library of Medicine,
    and genome centers in England and France, created an on-line
    map that pinpoints the locations of over 16,000 human genes--
    about one-fifth of the estimated 80,000 total. With it, the
    number of mapped human genes has tripled in less than two
    years; that number will likely double again over the coming
    year. Taking full advantage of cutting-edge information
    technology, the electronic map is a mouse click away from on-
    line references in the medical and research literature, which
    will aid scientists in linking information about a likely
    disease gene to its role in cell function.
        Human genome maps and technologies are now making the
    difficult ``needle in a haystack'' search for genes much
    easier. As a result, the number of disease genes isolated
    nearly doubles every year. In 1996, 21 disease genes were
    isolated using genome maps--almost twice as many as the year
    before and nearly five times the number isolated the year the
    genome project began. Among them are genes that contribute
    significantly to human diseases, including polycystic kidney
    disease, an adult form of diabetes, and hereditary
    hemochromatosis (HH).
        HH is a common disorder of iron metabolism, affecting about
    1 in 400 individuals of Northern European descent. It occurs
    when both parents contribute a mutated HH gene to their child.
    About 1 in 10 individuals carries a single mutated HH gene. The
    major symptoms of HH--liver cirrhosis, heart deterioration, and
    other organ failures--don't occur until mid-life, and
    untreated, the disease causes early death. But treatment by
    simple blood letting allows people with HH to live a normal
    lifespan. Because HH is so common and easily treatable, it
    provides an excellent example for offering genetic testing on a
    large scale to identify people at risk for a disease and
    enabling them to avoid becoming ill. NHGRI and the Centers for
    Disease Control and Prevention are planning a workshop this
    spring to examine the scientific, ethical, social, and medical
    implications of widespread testing for HH.
        The ultimate map of the human genome will spell out all 3
    billion letters that make up human DNA. Ongoing projects to
    sequence the DNA of non-human organisms have provided an
    opportunity for scientists to practice sequencing genomes much
    smaller than that of the human, but bigger than anything
    sequenced before. This past year, an international consortium
    of scientists finished spelling out the entire genetic code of
    a species of yeast valuable to biologists and commonly used by
    bakers and brewers. At 12,057,500 bases, the yeast genome is
    the largest to be completely deciphered so far and is the most
    advanced organism yet to be sequenced. Having the entire yeast
    DNA sequence now paves the way for scientists to study how all
    the genes in a complex cell similar to human cells function as
    a system.
        With progress in sequencing moving so rapidly, NHGRI has
    launched pilot studies at six U.S. research centers to explore
    the feasibility of large-scale sequencing of human DNA--the
    most technologically challenging phase of the Human Genome
    Project. This initiative is projected to produce the sequence
    of about 3 percent of human DNA in the first two years and will
    help to streamline and cut the cost of DNA sequencing in order
    to finish the entire human genome by the year 2005.
        Using current mapping technology to understand the
    inheritance of single-gene disorders--the so-called
    ``Mendelian'' disorders--is usually relatively straightforward.
    Current genetic maps are now dense enough to place a disease
    gene within reach in a matter of weeks. This past year, these
    maps led NHGRI scientists to a gene associated with Parkinson's
    disease in a large Italian-American family and to a gene
    associated with prostate cancer in another study of 91 American
    and Swedish families. Although these genes have not yet been
    isolated, ``linking'' them to specific chromosomes gives
    scientists the first direct evidence that genes play an
    important role in these disorders.
        But most diseases of modern life--cancer, heart disease,
    diabetes, arthritis, and a host of neuro-psychiatric
    disorders--seem to result from the activities of several genes
    and the interplay between a human body and its environment.
    NHGRI is supporting several initiatives to make the complex
    genetic and environmental components of these disorders easier
    to decipher and understand, and thereby easier to prevent or
    treat.
        In a creative government-university partnership, eight
    components of the NIH, led by NHGRI, and the Johns Hopkins
    University School of Medicine, have established a new research
    center to facilitate analysis of the complex genetics of these
    common disorders. The new Center for Inherited Disease Research
    (CIDR) is located on the Johns Hopkins Bayview Medical Center
    in Baltimore and is expected to be fully operational this
    spring. Under full capacity, CIDR researchers expect to study
    six to nine complex disorders per year.
        In other studies of complex disorders, NHGRI and the NIH
    Office of Research on Minority Health are collaborating with
    scientists at Howard University to study why people of African
    descent seem to develop adult-onset diabetes and prostate
    cancer more frequently than do many other population groups.
    Understanding the genetic basis of an increased risk for these
    diseases could lead to better strategies to prevent them from
    causing serious health problems.
        Tracking down all the genetic components of a complex
    disorder requires analysis of the entire genomes of hundreds
    and perhaps thousands of individuals. For this to be possible,
    genome maps must be easily adapted to highly automated
    strategies. In the coming years, NHGRI will begin improvements
    on the existing maps, which have been so useful in finding
    single-gene disorders, to increase their usefulness in
    ferreting out the multiple genes that contribute to so many of
    today's common disorders.
        The impact on the future of biology of knowing the order of
    all 3 billion human DNA bases has been compared to Mendeleev's
    establishment of the Periodic Table of the Elements in the 19th
    century and the advances in chemistry that followed. The
    complete DNA sequence of the human--the biologic periodic
    table--will make it possible to define a unique `signature' for
    every gene. Rapidly evolving technologies, comparable to those
    used in the semi-conductor industry, will allow scientists to
    build detectors that trace hundreds or thousands of these gene
    signatures in a single experiment. Scientists will use the
    powerful new tools to reveal the secrets of disease
    susceptibility, create broad new opportunities for preventive
    medicine, and provide unprecedented information about the
    origin and migration of human populations.
        One example of this kind of experiment was recently carried
    out by NHGRI-supported scientists who developed an automated
    method for determining differences as small as one base pair in
    comparisons of the entire 16,000 base-pair mitochondrial genome
    among 10 human volunteers. The scaled-up technique could
    potentially be used to analyze the entire 3 billion base-pair
    nuclear genome of the human in a single experiment. NHGRI
    scientists are using similar technologies to identify the broad
    range of genes possibly activated during cancer development.
        While scientists are discerning the secrets once buried in
    the human genome, concerns about how the information will be
    used outside the laboratory call for new public policies about
    privacy and discrimination. An NHGRI-supported study showed
    that individuals from families with genetic disorders
    experience frequent discrimination in health insurance. Some do
    not even apply because they believe they will be turned down
    because of their condition.
        NHGRI has established productive partnerships among
    consumers, scientists, and policy makers to help reduce the
    possibility that genetic information will be used to harm an
    individual or family members. The Ethical, Legal, and Social
    Implications (ELSI) Working Group in collaboration with the
    National Action Plan on Breast Cancer (NAPBC), has created a
    successful model for policy development through a series of
    workshops on genetics issues. The first of these resulted in
    recommendations on genetic information and health insurance
    that were later incorporated in part into the Health Insurance
    Portability and Accountability Act of 1996. While it is a
    laudable first step, the law is not the final solution since it
    still allows insurers to set exorbitant premium rates for
    holders of individual policies, which for many consumers
    amounts to denial of coverage. A second ELSI-NAPBC workshop
    developed recommendations relating to genetic discrimination in
    employment. The ELSI-NAPBC team is also interested in
    addressing privacy issues.
        The Task Force on Genetic Testing (TFGT) of the ELSI
    Working Group has been examining the strengths and weaknesses
    of current practices and policies for development and delivery
    of safe and effective genetic tests in the United States and
    the quality of laboratories providing the tests. Last March,
    the TFGT released a set of interim principles for public
    comment. The final principles and recommendations of the task
    force have just been published in the Federal Register for
    public comment and will be reported to the Working Group this
    spring.
        In another ELSI project on genetic testing, NHGRI is co-
    sponsoring a consensus development conference this spring to
    look at issues related to testing for cystic fibrosis mutations
    and to determine whether such testing should be a standard part
    of medical care.
        The broad range and critical importance of ELSI issues
    prompted NHGRI last spring to establish an outside group to
    evaluate the role of the ELSI Working Group in these functions.
    To provide the best attention to these important issues, the
    evaluation committee recommended dividing the Working Group's
    responsibilities among different committees and at various
    levels within the government, including a newly established
    ELSI Research Evaluation Committee to oversee the ELSI grant
    portfolios at NHGRI and DOE, an NIH-wide process to coordinate
    the ELSI activities of the various institutes engaged in
    genetics research, and a federally chartered committee at the
    DHHS level to formulate public policy resulting from advances
    in genetics.
        As the demand for genetic tests moves from the medical
    genetics specialty into general practice, it is imperative that
    health care professionals across disciplines understand the
    technology and its potential benefits and risks. NHGRI has
    played a leading role, along with the American Medical
    Association and the American Nurses Association, in forming the
    National Coalition for Health Care Professional Education in
    Genetics. This Coalition brings together leaders in medical
    professional organizations, consumer groups, government
    agencies, and industry to develop and implement a national
    genetics education program for health care professionals. An
    organizational meeting was held last July, and the first
    meeting of the full Coalition will be held this spring.
        Mr. Chairman, I am rewarded and astounded by the strides
    human genome research has made and the unprecedented
    opportunities it offers biomedical science to improve the lives
    of people in this country and around the world. The President's
    request for fiscal year 1998 for the National Human Genome
    Research Institute is $202,197,000. I am happy to answer your
    questions.

                    issues for the national cancer institute

        Senator Specter. OK. Thank you very much.
        We are not able to go through each one of the Institutes,
    but I wanted to proceed with as many as we could cover here. We
    are going to have a hearing on Thursday, June 19, involving
    issues for the National Cancer Institute and the recent study
    completed by Dr. John Bailar, so we will take up NCI at that
    time.
        Dr. Varmus, what I would like to receive from everybody who
    is here, is a short statement, beginning with last year's
    budget, through next year's requested budget, summarizing what
    has been accomplished; then include what could be accomplished
    with a doubling of the budget. My colleague, Senator Tom
    Harkin, refers to all the doors which are not open; please
    include an estimate, as to what would be present if those doors
    could be opened. And as I stated earlier, specify what the
    cost-effectiveness would be to the extent that can be
    articulated.
        I well understand the difficulty, perhaps impossibility, of
    precision along this line. But to the extent that it could be
    done, it would be very helpful.
        Two years ago, when the House came in with the reduction of
    the NIH budget of $900 million, we convened a hearing with
    everybody present and talked very much about the same line. We
    were able to restore that money on the Senate side, as well as
    increase it. We have to make our case. This is the toughest of
    times. It is the best of times for what you can accomplish, but
    the toughest of times for what funds are available. So I would
    like you to respond to those questions as best as possible, so
    that when we put them in the Congressional Record, people will
    read them and be inspired by them.
        [The information follows:]
                NIH Recent Accomplishments and Future Directions
    New vaccines
        For many years brain damage caused by Hemophilus influenza type B
    (Hib), a bacterium with a polysaccharide (sugar) outer coat, was the
    leading cause of acquired mental retardation in the U.S. Since the
    incorporation of an NIH-developed vaccine into the routine required
    childhood immunization series, the number of cases of Hib meningitis
    has fallen from about 20,000 a year to fewer than 100. The disease is
    on the verge of elimination.
        Scientists are using the novel polysaccharide concept to develop a
    new generation of vaccines against other infectious diseases, such as
    typhoid fever, whooping cough, dysentery, and pneumonia.
    Biological link between smoking and lung cancer
        Scientists have unveiled how a chemical in cigarette smoke--long
    known to be a risk factor for lung cancer--can cause the disease. This
    work provides a definitive link between smoking and lung cancer.
        The technology scientists used to make this discovery is revealing
    how cancer begins and what mechanisms future cancer treatment must
    target.
    Disability rate down in the elderly population
        Epidemiologic studies have revealed that disability among elderly
    people decreased at a striking rate in the 1980s. Research has shown
    that a small number of conditions--including stroke, hip fracture,
    pneumonia--lead to many of the hospitalizations that precede
    disability.
        Continued research can define how to further reduce disability
    rates, even in the oldest old, to improve quality of life and reduce
    national health care costs as the elderly population increases.
    Reducing stroke and heart attack
        Treatment with a low-dose diuretic to reduce high systolic blood
    pressure cuts strokes and heart attacks by a third in older patients.
    This finding is especially important for older patients with diabetes
    who have a higher risk of cardiovascular disease and therefore benefit
    more from the treatment. Diabetes affects an estimated three to five
    percent or more of the U.S. population.
        Additional research will investigate the use of other
    antihypertensive drugs to reduce stroke and heart attack rates among
    people with diabetes.
    Hemophilia treatment
        Advances in gene therapy research led to the recent development of
    recombinant factor IX, the first treatment for hemophilia B that is
    totally free of blood products, thus creating a minimal risk of
    infection. The clotting factor has been shown to be effective in
    clinical trials not only for bleeding episodes, but also for use in
    surgery.
        Genetic engineering techniques are being used to create new
    ``combination'' clotting factors that have high activity and can be
    given in low doses, thereby reducing today's high treatment costs for
    hemophilia.
    Treatment for drug dependence
        Heroin use remains a serious problem in the U.S. The number of
    heroin-related visits to hospital emergency departments rose from
    38,100 in 1988 to 63,000 in 1993, an increase of 65 percent. A recent
    study of a treatment known as LAAM, just approved in 1993, has shown
    that heroin-dependent individuals can reduce their use of the opiate by
    up to 90 percent. Those receiving high doses of LAAM were able to
    achieve full abstinence over the study period (30 days).
        This NIH-supported study shows that heroin addiction can be treated
    effectively. It is an important step in the ongoing efforts to develop
    effective medications that will enhance behavioral and psychotherapies
    used in drug treatment programs.
    Mouse model for diabetes developed
        Some degree of insulin resistance is thought to affect about 25
    percent of the population, predisposing such individuals to development
    of overt diabetes later in life. Adult-onset diabetes, known as non-
    insulin dependent diabetes mellitus (NIDDM), affects about five percent
    or more of this country's population. Studies suggest that the disease
    may be due to multiple genetic defects. NIH researchers recently
    developed a mouse model that will allow them to study the interaction
    of a string of such defects.
        Because there is no cure for the disease, there is an urgent need
    for such animal models, both to investigate the cause of the disease
    and to develop new therapies. Similar animal models may apply to other
    common disorders such as hypertension and cancer.
    Vaccine development
        Rotaviruses cause 35 to 50 percent of the world's severe diarrhea
    cases in infants and young children, resulting in more than 800,000
    deaths annually, mostly due to dehydration. In the U.S., more than 1
    million cases of rotaviral diarrhea and 50,000 hospitalizations occur
    each year. NIH scientists designed a vaccine to prevent the disease
    that has been found safe, and effective 80 to 90 percent of the time.
        The vaccine has been submitted to the FDA for approval, and once
    licensed, will have a major impact on the health of the world's
    children.
    Spinal cord injury
        Some 10,000 Americans experience spinal cord injuries each year--
    more than two-thirds of them under age 30. NIH-supported clinical
    trials demonstrated the effectiveness of methylprednisolone, the first
    effective treatment for acute injury. Giving the drug over a 48-hour
    period results in improved function in patients with spinal cord injury
    if treatment begins within three to eight hours following injury,
    helping them to recover a substantial degree of independence.
        NIH expects that a new initiative to encourage research on spinal
    cord injury will result in similar findings in other important areas of
    spinal injury research.
    Reducing disability after stroke
        Some 500,000 Americans suffer a stroke each year. It is the third
    leading cause of death (after heart disease and cancer), killing about
    150,000 Americans each year; 80 percent of these strokes result from
    blood clots that reduce blood flow to the brain. NIH-supported clinical
    trials have shown that treatment with a clot-dissolving drug known as
    t-PA in the three hours following a stroke can increase by 30 percent
    the likelihood that a patient will recover with little or no
    disability.
        NIH is leading a public education campaign in an effort to make
    more medical professionals aware of the kind of care that will increase
    their patients' chances of leaving the hospital without disability.
    AIDS medications
        Decades of basic research into proteases--crucial enzymes made by
    cells and viruses, including HIV--led to the development of the
    powerful new class of anti-HIV medications known as protease
    inhibitors. These drugs are now widely prescribed as part of
    combination therapies for HIV-infected people.
        NIH recently released a document outlining principles to guide
    physicians on how to use these drugs in treating HIV patients. Research
    continues on how best to use existing drugs, as well as on new
    therapies that may offer advantages over existing drugs.
    NIH and private industry
        NIH intramural scientists have negotiated over 270 Cooperative
    Research and Development Agreements with private organizations to
    support a wide range of research activities. Research efforts by NIH
    intramural scientists have resulted in the award of over 550 patents on
    inventions, with over 700 licenses to develop commercial applications
    based on them. Products resulting from these patents include a simple,
    accurate and inexpensive screening test for HIV infection which may
    also be used to monitor the safety of public blood supplies; two major
    therapeutics against HIV-infection; and a vaccine for Hepatitis A--
    commonly spread by food and water contamination.
        These are only a few examples of the opportunities that become
    available when the public and private sectors collaborate.
    Sickle cell disease
        Sickle cell disease is the most common serious inherited blood
    disorder in the U.S., affecting an estimated 80,000 Americans,
    primarily African-Americans. With NIH support, researchers identified
    an effective treatment for adults with the disease--hydroxyurea, a
    relatively inexpensive compound. The drug is effective in relieving the
    severe pain of sickle cell crises and reducing the number of episodes.
    The treatment significantly reduces the need for costly blood
    transfusions and hospitalizations. Another NIH-supported study has
    demonstrated that bone marrow transplantation in children with sickle
    cell disease can provide a cure for young patients who have a matched
    sibling.
        These are two important steps in ongoing efforts to find a
    potential cure for the diseases.
    Gene identified for prostate cancer
        A team of NIH scientists and grantees found the first proof that
    genes conferring hereditary predisposition to prostate cancer exist.
    They identified a gene that when mutated may be responsible for at
    least a third of the cases of prostate cancer in families.
        This finding should shed light on how and why prostate cancer
    develops and suggest ways to prevent and treat it.
    Scientists identify gene for Parkinson's disease
        NIH scientists have found that an abnormal form of a gene that
    codes for a protein in the brain causes some cases of Parkinson's
    disease, particularly those that occur before the age of 60.
        This discovery will lead to a genetic test for the disease in high-
    risk families and help researchers find ways to slow or stabilize the
    disease. Such preventive measures may eventually be useful in other
    forms of Parkinson's disease.
    New targets for drugs against HIV
        NIH grantees and others have discovered two proteins on the surface
    of the immune cells that are the targets of HIV, the virus that causes
    AIDS. These ``cofactors'' allow the virus to fuse with the cell and
    infect it. People who have defects in one set of these cofactors don't
    get infected with HIV even though they are exposed to it.
        These cofactors are potential targets for developing either drugs
    to block the virus from infecting cells or a vaccine to confer
    resistance against the virus.
    Strokes may make Alzheimer's symptoms worse
        Scientists have found that strokes may play an important role in
    the presence and severity of symptoms of Alzheimer's disease. In a
    group of patients who had changes in their brain that are
    characteristic of Alzheimer's, those who suffered strokes had more
    dementia and poorer cognitive function than those who didn't.
        Prevention or treatment of vascular diseases--like hardening of the
    arteries due to cholesterol--could delay or diminish the development of
    symptoms in many patients with Alzheimer's disease.
    Genetic research is paying off
        A team of scientists from NIH, university and commercial
    laboratories around the world have developed a map that pinpoints
    16,000 genes in human DNA--one-fifth the estimated total 80,000. A
    massive computerized database of the map is available to everyone over
    the Internet through NIH, providing students and scientists with an
    online educational tool.
        Scientists are now working on creating more detailed maps of the
    human and other biological systems (i.e., zebra fish and rat) to tackle
    diseases caused by the interaction of multiple genes.
    Free easy access to MEDLINE
        NIH is now providing all Americans with free access to MEDLINE--the
    world's most extensive collection of published medical information--
    over the Internet. Patients and their families, students, doctors and
    health professionals will all have at their fingertips the most current
    and credible medical information. This is often the critical link in
    reaching the right diagnosis, resulting in lives saved, unnecessary
    treatment avoided, and hospitalization reduced.
        Through MEDLINE, NIH is helping to ensure that the results of
    research benefit all Americans.
    New hope for repairing the brain and spinal cord
        NIH scientists and others have found that stem cells are present in
    the adult brain and spinal cord. Stem cells are ``mother cells'' that
    can divide to form other kinds of cells. For decades, scientists
    believed that the adult central nervous system could not repair itself,
    in part because it lacked stem cells. They can be grown in the
    laboratory and ultimately manipulated and used to replace cells that
    have been lost to injury or disease.
        With additional research, this could provide new hope for people
    with Parkinson's disease, spinal cord injury and a host of other
    disorders.
                   national heart, lung, and blood institute
    Accomplishments
        This year, as the NHLBI reaches its 50th anniversary, Americans can
    celebrate the great advances in public health made possible through
    their longstanding investment in biomedical research.
        In 1948, a heart attack signaled the end of an active life. One-
    third of the patients who reached the hospital died within weeks, and
    survivors still faced a long ordeal. Nowadays, most patients return to
    normal activities within weeks of a heart attack, and many heart
    attacks are being prevented through control of risk factors, blood
    pressure, cholesterol, smoking). In the last 30 years, the national
    age-adjusted death rate from coronary heart disease has decreased by
    more than half.
        Until recently, many premature infants died within hours of birth
    from neonatal respiratory distress syndrome. U.S. infant mortality is
    now at an all-time low due, in great part, to research that has enabled
    us to treat and prevent this lethal disorder.
        Average life expectancy of sickle cell disease patients has more
    than doubled in the past 25 years, as research has uncovered strategies
    to prevent the devastating complications of this disease and treat it
    painful symptoms.
    What could be accomplished in the future with additional funds
        Stemming the epidemic of heart failure.--As increasing numbers of
    Americans survive acute episodes such as heart attacks, heart failure
    has become our modern epidemic, and research needs in this area are
    pressing. Tremendous opportunities now existing to explore such
    approaches as grafting healthy muscle cells onto failing hearts,
    turning on the ability of heart muscle cells to reproduce themselves as
    occurs in wound healing, or interrupting the programmed death of heart
    muscle cells that appears to play a role in this fatal chronic disease.
        Preventing asthma.--Notwithstanding excellent progress in
    controlling asthma, the public health burden of this disease is
    increasing. Intensive modern research efforts have placed us on the
    threshold of unraveling, the genetic basis for asthma and understanding
    the mechanisms by which environmental exposures render individually
    susceptible to asthma or, conversely, protect them from it. Progress in
    this area will, in turn, open up new approaches for the primary
    prevention of asthma--a considerable advance over current practice,
    which is limited to preventing symptoms in patients who have already
    developed the illness.
        Finding heart disease before it finds you.--Researchers have
    recently developed new magnetic resonance imaging (MRI) techniques to
    visualize the coronary arteries, map blood flow through all major
    arteries of the circulatory system, and measure heart function. This
    technology offers enormous potential for safe, inexpensive, accurate
    diagnosis of disease long before symptoms occur. With the wealth of new
    information cardiac MRI can provide, we will be in a much stronger
    position to intervene early to delay, arrest, or even reverse heart
    disease.
                           national cancer institute
    Accomplishments
        Decrease in cancer death rates.--Overall cancer mortality rates,
    which had been rising all century, have finally begun to fall. The 1-2
    percent drop in age-adjusted mortality rates since 1991 appears to be
    just a beginning--representing thousands of lives saved per year that
    would have been lost.
        Improvements in the prevention of cancer.--Smoking education and
    cessation programs have helped cut tobacco use, the major cause of lung
    cancer. About 37 percent of adults smoked cigarettes in 1971 compared
    with about 25 percent in 1994. NCI is currently testing 24 agents in 78
    clinical trials aimed at preventing cancer. The identification of
    infectious causes of cancer provides another type of prevention
    opportunity. Based on major breakthroughs at the NCI, a vaccine against
    human papilloma virus, the major causative agent of cervical cancer, is
    being developed.
        Improvements in cancer detection and diagnosis.--Over the past 25
    years, remarkable improvements in cancer detection and diagnosis have
    occurred. These include Computed Tomography (CT), Positron Emission
    Tomography (PET) and Magnetic Resonance Imaging (MRI). Today, 65
    percent of breast cancers are found as localized disease compared to
    less than 40 percent of 20 years ago. As a result, 5-year survival
    rates are over 90 percent for patients with these localized cancers.
        New drugs for cancer treatment.--In the past year alone, 12 new
    drugs were approved by the FDA for the treatment of cancer, and were 10
    New Drug Applications are anticipated in 1997. In the biotechnology
    industry, over 40 new agents are in clinical trials for cancer. Notable
    results of clinical trials over the past year include the demonstration
    of a 30-percent reduction in cancer mortality for adjuvant therapy in
    stage C colon cancer translating into approximately 4,000 lives saved
    each year, and as these benefits may extend to stage B patients, the
    benefits may be even greater.
        Improvements in quality of life for cancer survivors.--There have
    been critical advances in the quality of life for our 7.5 million
    cancer survivors. Longer survival time after diagnosis--time to spend
    with family and community, less destructive and disfiguring surgery,
    better control of pain and other disabilities, so that people who would
    have lost their voices can speak, those who would have lost limbs can
    walk, and many others can keep the function of their bowel and bladder.
    What could be accomplished in the future with additional funds
        More ideas about cancer prevention, early detection, and treatment
    could be pursued.--The NCI is able to fund less than one in four of the
    grant applications. Pursuing more ideas will speed the reduction in the
    burden of cancer.
        More access to clinical trials and state-of-the-art cancer care at
    cancer centers could be provided.--Only about 2 percent of eligible
    adult cancer patients are participating in clinical trials for new
    therapies. This condition slows the progress and keeps promising new
    drugs waiting in line for testing. The NCI currently supports 55 cancer
    centers around the Nation. Increasing this number to 75 or more such
    centers would put more Americans close to a cancer center.
        More ways to prevent cancer could be tested.--A National Prevention
    Clinical Trials Program would permit the testing of emerging ideas
    arising from breakthroughs in the understanding of the causes and
    development of cancer.
        More cancers could be detected earlier to improve chances of better
    outcomes.--It is known that early detection and effective screening can
    save lives because cancers caught early are more treatable. Even the
    best screening methods like mammography and PSA (prostate specific
    antigen) can and must be improved upon. Detection of pre-cancerous
    conditions would enable the treatment of these pre-cancers.
        More immediate response to breakthroughs in cancer genetics could
    be possible.--Most of the genes that are involved in cancer will soon
    be understood in more detail than ever before. Developing NCI's Cancer
    Genetics Network would speed the benefits of the genetic revolution in
    cancer to more and more Americans.
                     national institute of dental research
    Accomplishments
        NIDR has taken the lead to improve the plight of patients with
    oral, pharyngeal and laryngeal cancers. Over 42,000 Americans are
    diagnosed with these cancers every year and the death toll is
    approximately 9,000 people annually. Those who survive are often
    disfigured and have suffered the consequences of chemo- or radiation-
    therapies which can seriously impair such vital functions as speaking,
    tasting, chewing and swallowing. Moreover, the prognosis for survival
    of cancer after 5 years is only 50 percent.
        To help remedy this situation, NIDR established four Oral Cancer
    Research Centers in fiscal year 1996: The University of Alabama,
    Birmingham; University of California, San Francisco; University of
    Chicago with Northwestern University; and University of Texas-M.D.
    Anderson Cancer Center in Houston. The first three are co-funded with
    the National Cancer Institute (NCI). The center approach, combining
    basic and clinical research by teams of investigators, will lead to
    improved diagnosis, better methods of reducing known risk factors and
    ``smarter'' therapies--such as those aimed at restoring tumor-
    suppressing gene activity or causing cancer cells to self-destruct.
        NIDR has also assumed leadership in a National Plan to Combat Oral
    and Pharyngeal Cancer; the Institute also collaborates with NCI in a
    number of health promotional activities to discourage young people from
    using smoked or smokeless tobacco products.
    What could be accomplished in the future with additional funds
        A doubling of our investment in oral cancer research over the next
    5 years might profoundly reduce the number of new cases of oral cancers
    and lower the annual death rate and with that, the burden of extensive
    medical costs (surgery, radiation, chemotherapy, rehabilitation).
    Cost savings resulting from medical research
        Research demonstrating how to prevent dental caries (tooth decay)
    has paid off in saving Americans billions of dollars in their dental
    bills every year. Indeed, the accumulated total funding to NIDR since
    its establishment 49 years ago is less than the $4 billion a year now
    being saved in the Nation's dental bill. In 1948, the year NIDR was
    established, half the population was toothless (edentulous). Today that
    figure is down to 10 percent--with a corresponding increase in the
    quality of life.
        A recent economic analysis (Brown, Beazoglou & Heffley, 1994) is
    the source for these data. The investigators identified a slowing in
    the growth of U.S. dental expenditures for the periods 1979-1989,
    estimating that this resulted in savings of more than $39 billion (1990
    dollars). Their analysis attributed these savings to improved oral
    health resulting from preventive measures developed through a sustained
    agenda of oral health research. Benefits have come from the adoption of
    community water fluoridation, the widespread use of fluoride tooth
    pastes and mouthwashes, the application of dental sealants and
    improvements in public knowledge and adoption of good oral hygiene and
    sound diets. A more recent update of this analysis to cover the years
    1979-1992, found total estimated savings of $60 billion (1992 dollars)
    for the 14-year-period, or approximately $4 billion in savings per
    year.
        national institute of diabetes and digestive and kidney diseases
    Accomplishments
        Pinpointing the causes of disease.--Impressive progress has been
    realized in identifying disease-causing genes. Research has narrowed
    the quest for multiple genes believed to be implicated in diabetes, a
    complex genetic disease. Advances in single-gene diseases have been
    remarkable, including the landmark discovery of the cystic fibrosis
    gene and its protein product, which paved the way to previously
    impossible research on promising drug and gene-based therapies.
    Recently, genes for obesity, hemochromatosis, hereditary pancreatitis,
    and major forms of polycystic kidney disease (P.K.D.) have been
    discovered. Paralleling these genetic advances are impressive new
    insights about metabolic, infectious, inflammatory and immune-mediated
    bases of diseases.
        Preventing and treating disease.--The multicenter Diabetes Control
    and Complications Trial demonstrated that the eye, nerve and kidney
    complications of diabetes can be prevented by intensive management of
    blood glucose levels--a vitally important and potentially cost-
    effective public health finding. The demonstration that blood-pressure
    lowering drugs can prevent the kidney disease of diabetes has likewise
    produced another important advance in diabetes management, with major
    implications for reducing the enormous Medicare costs of treating end-
    stage renal disease. The national investment in acquiring an extensive
    body of knowledge about diabetes has enabled the NIDDK to launch its
    first clinical trials aimed at primary prevention of both forms of the
    disease in high risk individuals, including Native Americans, African-
    Americans and other minority populations disproportionately affected by
    the non-insulin dependent form. In other prevention-related research,
    new insights into bionutrition and discoveries of novel proteins,
    hormone analogs, and endocrine growth factors abound. Newly found
    peptides may have potential in protecting against digestive tract
    injury, and transforming growth factor may play an important role in
    prostate enlargement and breast tumors.
        Harnessing basic science and new technologies to combat disease.--
    Success in detailing the molecular architecture of cellular proteins is
    providing new tools of molecular medicine. NIDDK structural biologists
    contributed to elucidating the structure of the p53 tumor suppressor
    gene--widely believed to play a protective role in cancer--and the
    structure of integrase, a protein essential to the cellular integration
    and replication of the AIDS virus. Tools of molecular hematology are
    shedding light on cellular differentiation, important to developmental
    diseases of children, cancer, and other diseases.
    What could be accomplished in the future with additional funds
        New initiatives would rapidly exploit the unprecedented
    opportunities for diagnosis, treatment and prevention made possible by
    the recent discovery of genes for diseases such as obesity and PKD, and
    progress in the search for diabetes genes. In each major NIDDK disease
    area, similar new initiatives would be framed to maximize scientific
    opportunities.
        Researchers would undertake full and immediate pursuit of the
    explosion of new knowledge generated by elucidation of the genetic
    basis of obesity--a major risk factor for non-insulin-dependent
    diabetes--and the hormonal regulation of body metabolism, weight, and
    appetite. Such intensified genetics research would promote spinoff
    research and development by the U.S. pharmaceutical and biotechnology
    industries.
        In diabetes, molecular genetic techniques would be applied at an
    accelerated rate to propel the promising quest for diabetes genes to
    successful completion. A major new diabetes initiative would focus on
    the development of new therapies by which patients could more easily
    control their blood glucose levels and reap the benefits of preventing
    diabetes complications. Primary prevention trials in diabetes would be
    expanded, and potential antigens in insulin-dependent diabetes would be
    scrutinized.
        Parallel initiatives would be launched for other major diseases
    where compelling needs and opportunities exist, including research to
    prevent or delay the progression of end-stage kidney and liver disease,
    inflammatory bowel disease, and urologic diseases such as interstitial
    cystitis. benign prostate hyperplasia and prostatitis. Researchers
    would exploit new insights into the role of growth factors in prostate
    and breast cancer, and in thyroid, blood and bone diseases.
        The tremendous momentum of fundamental science--in structural
    biology, molecular hematology, and other fields--would be harnessed to
    design new clinical applications, including the development of designer
    hormone analogs, which would have all the benefits of hormones without
    unwanted side effects. Concomitantly, basic science would be propelled
    forward, to ensure an uninterrupted stream in the acquisition of new
    knowledge for future clinical application.
            national institute of neurological disorders and stroke
    Accomplishments
        The NINDS research mission includes more than 600 neurological
    disorders that affect the brain, spinal cord, and peripheral nerves.
    Until recently, often the best that could be offered to people with a
    neurological disorder was a name for their disease and the prospect of
    lifelong disability or inevitable deterioration. However, we are now
    entering a new era with the development of treatments for neurological
    disorders including stroke, epilepsy, multiple sclerosis, and spinal
    cord injury.
        Stroke.--Stroke is now viewed as a ``brain attack'' which, like a
    heart attack, in many cases may be prevented or promptly treated. For
    example, clinical trials supported by the NINDS have demonstrated the
    benefits of aspirin and warfarin for stroke prevention in specific
    patients. In 1996, the first emergency treatment for stroke, the clot-
    dissolving drug t-PA, was approved by the FDA based on the results of
    an NINDS-supported clinical trial that showed a 33-percent increase in
    the number of patients that are free of disability 3 months after
    stroke.
        Spinal cord injury.--A multi center clinical trial under the
    direction of an NINDS grantee demonstrated the effectiveness of
    methylprednisolone for the treatment of acute spinal cord injury, and
    set a new international standard of treatment for these patients. The
    results from a second trial completed this year have shown that giving
    the drug for a longer period of time can significantly improve recovery
    over the standard treatment among patients who start treatment between
    three and eight hours of injury.
        Multiple sclerosis and epilepsy.--NINDS-supported research led to
    the development of two new drugs to slow the progression of multiple
    sclerosis, and a new drug that reduces seizure frequency over 80
    percent in selected patients with epilepsy.
    What could be accomplished in the future with additional funds
        With increased understanding of how the normal brain develops and
    functions, coupled with new insights about what causes neurological
    disorders, improvements in diagnosis, prevention, and treatment are on
    the horizon. Areas of opportunity, that could benefit from additional
    resources:
        The growing brain.--Dramatic progress in understanding how
    experience and genetic influences shape the developing brain has
    profound implications for treating disease. Further research into how
    nerve cells survive, develop, specialize, and communicate with each
    other will benefit not only disorders of childhood, but also adult
    disorders such as stroke, brain injury, and neurodegenerative disease.
        Inherited brain diseases.--Over 100 defective genes linked to
    neurological disorders have been discovered so far. Finding the
    defective genes causing disorders such as Friedreich's ataxia, Batten
    disease, neurofibromatosis, and some inherited epilepsies allows for
    the development of new or improved diagnostic tests, the development of
    animal models for the disease, and investigations of how the genetic
    defect translates into human disease.
        Parkinson's disease.--The recent discovery of the gene location for
    some cases of Parkinson's provides a powerful new tool for research on
    understanding nerve cell death. Increased funding would support efforts
    to further investigate and develop therapeutic and prevention
    strategies, including the use of cell survival molecules (trophic
    factors), surgical interventions such as pallidotomy and deep brain
    stimulation, and the growth of engineered cells to produce dopamine,
    the essential brain chemical that is not adequately produced in
    Parkinson's disease.
        Mending the nervous system.--A century of pessimism about whether
    damaged nerve cells in the brain and spinal cord can ever regrow after
    damage is giving way to guarded optimism. Demonstrations in animals
    have shown that regrowth can be achieved under certain conditions, for
    example, when natural barriers to growth were neutralized with
    antibodies, treated with x-rays, or bypassed with peripheral nerve
    grafts. Further work is needed to understand how to coax useful
    regeneration of damaged brain and spinal cord cells.
        Saving nerve cells.--Surprisingly, similar mechanisms kill nerve
    cells in disorders as diverse as stroke and acute injury as well as
    slow degenerative diseases, such as amyotrophic lateral sclerosis and
    Parkinson's. Understanding these destructive processes that involve
    free radicals, cell suicide, and excess release of calcium and nerve
    cell signals provides targets for the development of new therapies.
             national institute of allergy and infectious diseases
    Accomplishments
        Fundamental research into the structure and function of the human
    immunodeficiency virus (HIV) led to the development of a powerful new
    class of anti-HIV medications protease inhibitors--that have
    revolutionized the treatment of HIV-infected people.
        NIAID-supported scientists clarified the process by which HIV
    infects its target cells and uncovered important clues about why some
    individuals appear to be immune to HIV infection. These findings
    provide the scientific basis for developing new treatment and vaccine
    strategies.
        NIAID scientists and their collaborators developed a safe and
    effective vaccine against rotavirus, the cause of more than 800,000
    diarrhea-related death worldwide each year. This vaccine is now nearing
    licensure.
        Investigators in NIAID's National Cooperative Inner-City Asthma
    Study identified important factors involved in the recent increase in
    asthma prevalence, such as high levels of cockroach allergen in the
    home. Subsequently, they designed and proved the effectiveness of
    asthma intervention strategies for inner-city children.
        NIAID-supported researchers and their colleagues developed highly
    sensitive and non-invasive tests for gonorrhea and chlamydia, the
    leading causes of pelvic inflammatory disease and sterility. Used in
    the context of large-scale screening programs, these tests hold promise
    for dramatically reducing the incidence and health and economic burden
    of these sexually transmitted diseases.
    What could be accomplished in the future with additional funds
        Accelerated progress in developing now vaccine strategies, such as
    ``naked DNA'' vaccines. This vaccine approach has shown promise for
    several diseases for which no effective vaccine currently exists,
    including HIV and tuberculosis.
        Further progress toward understanding the mechanisms of the
    emergence of infectious disease.
        Expanded research into the growing problem of drug resistance, with
    the goals of understanding the biological mechanisms of resistance,
    preserving the effectiveness of currently available antibiotics, and
    developing new classes of antibacterial agents.
        Increased support of basic immunology research. which continues to
    yield the fundamental insights needed to develop interventions for
    preventing transplant rejection and for treating immunologic diseases
    such as allergic and autoimmune diseases.
        Accelerated support to develop a vaccine effective against malaria.
        national institute on deafness and other communication disorders
    Accomplishments
        Otitis media.--Otitis media (OM) is a bacterial infection of the
    middle ear common in young children 3 months to 3 years of age. OM is
    the major reason cited for taking infants and young children to
    emergency rooms or, to physicians' offices. Scientists funded by the
    NIDCD have recently been successful in developing a candidate vaccine
    to prevent OM.
        Hereditary hearing impairment.--Twelve different genes on 10
    different chromosomes have been located for various forms of autosomal
    dominant nonsyndromic hearing impairment, and 11 different genes on as
    many different chromosomes have been identified for autosomal recessive
    nonsyndromic hearings, impairment. Additionally scientists have
    recently found mutations in mitochondrial genes to be associated with a
    variety hearings disorders including aminogylcoside ototoxicity.
        Regeneration in the auditory system.--Cochlear hair cells that are
    destroyed are not replaced, resulting in permanent hearing loss.
    Research efforts are focusing on the role of molecular events in
    promoting hair cell regeneration following experimentally induced
    damage. In a new approach to understanding hair cell regeneration, an
    NIDCD-supported scientist investigating hair cell has succeeded in
    generating new hair cells by adding protein kinase A that stimulates
    cAMP signaling pathways.
    What could be accomplished in the future with additional funds
        Otitis media.--With the promising candidate vaccine in hand,
    scientists are now ready to move into phase I clinical trials that will
    assure safety, and later a phase II trial in children to determine
    clinical effectiveness. An increase in the budget at this time would
    accelerate the testing of this vaccine and allow its delivery to the
    public in 6 years. Accelerated further development and testing of the
    candidate vaccine would ensure that infants and children would be
    spared the severe pain and sometimes serious side effects of these
    middle-ear infections, and in so doing would be expected to save $5
    billion per annum in health care costs.
        Hereditary hearing impairment.--Further investigations would apply
    advances in the field of molecular genetics to hearing health problems;
    and assure the prevention of late onset hereditary hearing impairment.
    It is anticipated that having this type of genetic information will
    also aid in the early identification of hearing impairment in infant,
    thereby helping parents to plan for the educational and habilitation
    needs of their children at the earliest possible opportunity and
    ensuring the acquisition of language, spoken or signed, on a normal
    schedule.
        Regeneration in the auditor system.--Additional funding would
    accelerate approaches that promote hair cell regeneration and repair in
    mammalian systems, thereby promising to hasten the delivery of
    therapeutic agents for the restoration of hearing and balance in
    individuals with sensorineural hearing loss and balance disabilities.
                        national institute on drug abuse
    Accomplishments
        Anti-addiction medications.--The development of new medications to
    treat addictions is critical to solving, this Nation's drug problems.
    This is particularly true for cocaine addiction, for which we currently
    have no medications--either for overdose, or to help people stop using
    drugs or to help them stay abstinent once they do stop. Brain research
    over the past decade has provided phenomenal insights into both
    addiction generally and into the mechanisms of cocaine's actions in
    particular. Basic research has identified many molecular targets for
    strategic medications development and numerous compounds are in various
    starves of development as potential medications, including sonic being
    tested in early clinical trials.
        Child and adolescent drug exposure and use.--Illicit drug use
    affects this Nation's children in many different ways and at all ages,
    from before birth through adolescence and beyond. Drugs impact our
    youth both through their exposure during the prenatal periods, as well
    as through their own drug, use as early adolescents. We are
    particularly concerned that drug use among youth is increasing and
    occurring at earlier ages. Research has clarified much about the nature
    these problems and suggested strategies to begin to deal with them.
    Within the past 3 years scientists have identified in detail quite
    subtle but important effects of fetal exposure to barbiturates,
    marijuana and cocaine on later emotional and cognitive development. For
    example, we are now seeing that so-called ``crack babies'' do not
    recover nearly as well as previously thought, and we are beginning to
    understand in detail the brain mechanisms mediating prenatal exposure
    effects on later behavior. Scientists have developed far more sensitive
    assessment techniques to detect prenatal drug exposure effects and
    begun to outline remedial strategies. Research has also revealed much
    about general principles and strategies effective in preventing
    children from beginning to use drugs themselves, as articulated in
    NIDA's recently published science-based guide to drug prevention.
    What could be accomplished in the future with additional funds
        Anti-addiction medications.--NIDA-supported research has provided
    the base in effective medications development. Questions remain,
    however, including the factors underlying powerful phenomena like drug
    craving and relapse after periods of abstinence. We know the major
    questions and many of the right strategies. Moreover, many candidate
    medications are now in line awaiting various stages of testing, from
    initial activity screening, to toxicity testing, to actual multi-site
    clinical trials. The rate limiting factor is the resources needed to
    support further and faster research and development efforts. Additional
    funds clearly would accelerate the pace of anti-addictions medications
    development and provide for the first time an array of truly effective
    treatments.
        Child and adolescent drug exposure and use.--The existing science
    base has begun to clarify exactly what the problems are and what
    appropriate approaches might be to reduce the impact of drug exposure
    both prenatally and by young people themselves. There is a critical
    need to develop more effective remedial strategies to reverse the
    subtle cognitive and emotional effects of early exposure to drugs. We
    need to know more about how the effects of drugs on the immature brain
    differ from those later in development and then what to do about them.
    Furthermore, in prevention research there is a great need to move from
    research on general principles to research on effective implementation
    strategies that can be used in diverse communities. Because we know the
    critical questions and how to begin to answer them, additional
    resources would greatly accelerate progress in decreasing drug use and
    the effects of drug exposure on our Nation's youth.
                    national human genome research institute
    Accomplishments
        The Human Genome Project was initiated in the belief that creating
    detailed maps of the human genome and understanding the makeup and
    exact DNA sequence of all the human genes would speed the discovery of
    genes involved in human disease. This, in turn, would dramatically
    improve the ability to develop tests that can identify an individual's
    risk for disease and enhance early detection and prevention.
    Ultimately, this knowledge will lead to radically new and more
    effective therapies.
        The promise of the Human Genome Project has been fulfilled beyond
    all expectations. Even before completion of all the original goals, the
    effects of the genome project have pervaded all of biomedical research.
    Gene discoveries have increased experientially and great progress has
    been made in the understanding of the underlying mechanisms of many
    diseases.
        At this point, work on the original mapping goals of the genome
    project is nearing completion. Work on the next challenge, the
    systematic sequencing of the entire human DNA is beginning. In parallel
    with the sequencing research on methods to facilitate the
    interpretation of all the DNA sequence is gaining momentum.
        In fiscal year 1996. NHGRI started a series of pilot projects to
    explore the feasibility of large-scale sequencing of human DNA. These
    projects have now demonstrated feasibility and are ready to ramp up
    their activities to achieve greater through-put. NHGRI has also
    recently issued two requests for applications to stimulate innovative
    research on technology for large-scale analysis of DNA function.
    Several approaches to this show promise. One is to compare DNA sequence
    between different organisms and deduce functional information from the
    similarities and differences. Another is to measure the rate of
    expression of the different genes in different tissues and under
    different conditions. A third is to use mathematical approaches to
    study the characteristics of the DNA sequence in comparison to sequence
    of known function. These areas of research promises to explode with
    opportunities in the near future.
    What could be accomplished in the future with additional funds
        If additional funds became available. NHGRI would invest them in
    several closely linked areas.
        The human DNA sequencing effort at this stage is limited by budget,
    not technology. An increased investment in this area could speed up
    sequencing and complete the human sequence earlier than the current
    target date, which is 2005. Increased funding would also allow
    sequencing of some mouse DNA, which would greatly assist in the
    interpretation of human DNA sequence.
        Now that DNA sequence is accumulating faster than it can be
    analyzed, there is a great need for technology for large-scale analysis
    of gene function. Many promising approaches are ripe for further
    development. The availability technologies would open up new frontiers
    of research on many diseases.
        While the current genome maps have been a boon for mapping single
    disease genes, they are of limited usefulness for tackling diseases
    caused by the interaction of multiple genes. Much more detailed maps
    composed of markers that can be analyzed in large numbers in automated
    fashion are needed. The technology for developing such maps is now
    available. Increased funding would allow the production of these maps.
                          national library of medicine
    Accomplishments
        The enormous amount of information generated by biomedical research
    must be disseminated efficiently and widely if the Nation is to realize
    fully the benefits from this investment. New communications technology
    can help bring this about. The growth of the National Information
    Infrastructure and the increasing access to high-speed computers and
    communications by the public, health professionals, and biomedical
    scientists, can have a fundamental impact on health and human services
    throughout the Nation.
        In October 1996, NLM announced the award of 19 multi-year
    telemedicine projects that will demonstrate and evaluate the use of
    this technology in a variety of settings: rural, inner-city, and
    suburban. Each project will review and apply recommendations from two
    National Academy of Sciences studies on criteria for evaluation of
    telemedicine and practices to ensure confidentiality of electronic
    health data. Summaries for these projects and links to their web sites
    are available.
        Internet Grateful Med (IGM) and PubMed are two new ways for NLM
    users to search MEDLINE over the World Wide Web, using the familiar
    interface of their web browsers instead of special software. Launched
    April 16, 1996, Internet Grateful Med is a newer member of NLM's
    Grateful Med family of programs. NLM's goal with this program is to
    help users find what they need in multi-million record medical
    databases. PubMed not only provides access to MEDLINE, but links to the
    full-text of journal articles at publisher's web sites. NLM's Board of
    Regents has recently approved free access to the MEDLINE database to
    users of the web, thus greatly expanding the availability of this
    information to health professionals and to the general public.
        The Visible Human Project, begun by NLM in the early nineties, has
    resulted in complete, anatomically, detailed, 3-dimensional
    representations of the male and female human body. It is freely
    available to researchers. Current applications of the Visible Human
    data include non-invasive colon cancer screening, simplified plastic
    surgery, prostate cancer surgical rehearsal, surgical simulation, the
    study of anatomy, radiation absorption modeling, and crash testing.
        On Thursday, October 24th, with a few keystrokes on a computer, a
    whole new world genetic information was unleashed on the Internet.
    ``The Human Gene Map'' project united 104 genemappers from three
    continents in a common goal of charting the location in the genome of
    tens of thousands of human genes. The fruit of their efforts is a
    database and web site of 16,354 human genes, roughly one-fifth of all
    human genes. The timing of the introduction coincided with the
    publication of ``A Gene Map of the Human Genome'' in Science. The
    massive computerized gene map database, available online to anyone with
    access to the web, is a pivotal development in the 15-year, $3 billion
    international human genome project.
        The Internet clearly offers a major strategic opportunity for the
    dissemination of NLM and other biomedical databases in the U.S. and
    globally. The Next Generation Internet will allow connections that are
    100 to 1,000 times faster than today's Internet, along, with better
    quality of service and the opportunity to demonstrate new applications.
    NLM is a leader in developing health care applications for the Next
    Generation Internet effort.
    What could be accomplished in the future with additional funds
        The present success and impact of the Library's high-technology
    programs could be multiplied with the addition of resources. The
    widening accessibility of biomedical information as a result of
    Internet Grateful Med and PubMed, the Library's pioneering Visible
    Human Project, the recently announced Human Gene Map, and NLM's
    significant effort in telemedicine represent extraordinary
    contributions to the world of medicine and research. Remarkable
    opportunities related to the President's Next Generation Internet
    initiative would accrue from:
      --Increased support for prototype telemedicine applications;
      --Expanding the coverage of Internet Grateful Med and PubMed;
      --Expanding existing grant assistance programs so that more
            institutions--including small and rural hospitals, medical and
            some public libraries--can have access to health information
            via the Internet; and
      --Ensuring that the necessary computer software and hardware
            resources are available to support the vital GenBank database
            of molecular sequence information. Such resources are needed to
            keep up with both the data being added as a result of human
            genome research funded by NIH and the rapidly expanding usage
            by the worldwide scientific community.
                     national center for research resources
    Accomplishments
        Investigators depend on NCRR to create, develop, and provide the
    infrastructure of modern science to keep science moving forward. That
    infrastructure takes many forms--from sophisticated instrumentation and
    technologies, clinical research environments, and animal research
    models of human disease. Examples include:
        Development of the first magnetic resonance images using
    hyperpolarized gas in living systems. This technology produces a signal
    many times more powerful than traditional MRI, with no added cost to
    the MRI system and only a moderate cost for polarized gas; this new
    approach will significantly enhance the diagnostic capability for
    clinicians;
        Visualization of the 3-D structure of cytomegalovirus' protease
    enzyme required for CMV replication, thereby providing a new target for
    antiviral drug design. Cytomegalovirus (CMV) infects up to 70 percent
    of the U.S. population and can cause life-threatening infections in
    immunosuppressed individuals;
        Using a noninvasive imaging technique, known as single photon
    emission computerized tomography, provided additional proof that
    increased transmission of the neurotransmitter dopamine causes the
    symptoms of schizophrenia;
        Investigators identified a gene that, with others, controls the
    regularity of a person's heartbeat. Sudden, unexpected cardiac
    arrhythmias cause a staggering death toll each year. By detecting
    individuals who have a mutated form of this gene, physicians will be
    able to prescribe medications that protect against this pernicious
    disorder.
    What could be accomplished in the future with additional funds
        NCRR's programs provide research infrastructure and cost-effective
    shared resource facilities for investigators supported by the other NIH
    components. Additional funds could support the development of and
    access to technologies to examine the structure of proteins involved
    with disease. This would allow support for increased access to high
    energy x-rays at synchrotron facilities and other high-end technologies
    for imaging of molecules and structures within cells or organs to study
    an array of diseases, ranging from diabetes, Alzheimer's, Parkinson's
    and many others. NCRR could also extend its program for supporting
    bioengineering approaches to decrease health care costs, as well as
    extend its support of investigators conducting innovative, high-risk
    research to develop new technologies to understand basic processes at
    the molecular and cellular levels and to develop novel therapeutic
    interventions for AIDS, diabetes, autoimmune diseases, cancer and
    others.
        Separately, NCRR could enhance the research capacity and
    investigator access to the Regional Primate Research Centers'
    specially-adapted biosafety laboratories to facilitate AIDS-related and
    other research with dangerous viruses and bacteria. Other rapidly
    evolving needs include repositories for genome-related studies of the
    mouse, rat, zebrafish, and other species. Those shared repositories
    will expedite research among investigators in a cost-effective way and
    facilitate studies to understand genes that impact human health.
        NCRR could extend support for clinical research through clinical
    research facilities at several RCMI-supported clinical research centers
    as well as through the national network of General Clinical Research
    Centers (GCRCs) which host nearly 8,000 investigators supported by the
    other NIH components for studies on cancer, asthma, neurological
    diseases, AIDS and many other diseases. Increased support for junior
    career development of clinical investigators would also be possible to
    assure that the research advances at the bench reach the patient.
                          fogarty international center
        FIC was established to advance the biomedical research priorities
    of the United States through international scientific cooperation.
    Foremost is the need to protect American citizens from health threats
    that transcend national boundaries. Through research training programs,
    small grants, individual fellowships and institutional partnerships FIC
    enables U.S. universities to increase their capacity to meet global
    health challenges.
        Through FIC programs, technical skills and conceptual insights are
    shared with scientists worldwide. U.S. scientists are able to extend
    the geographic scope of their research to confront health concerns that
    require international cooperation due to disease distribution and other
    factors. Well-trained teams of scientists are fostered in regions of
    the world that provide unique opportunities to understand disease
    etiology and risk factors and devise new diagnostics, drugs, vaccines
    and other prevention methods.
    Accomplishments
        The model for FIC's global health efforts is its AIDS International
    Training and Research Program (AITRP) established by Congress in 1988.
    Since its inception, over 1,000 foreign scientists from over 80
    countries in Africa, Asia, Latin America, and Central and Eastern
    Europe have received training in the United States. Many of these
    scientists are now co-investigators on NIH-supported research projects
    in developing countries where HIV/AIDS is epidemic. This past year the
    program documented a substantial decrease in the prevalence of HIV in
    the population of one foreign country as a result of a systematic
    prevention strategy. The geopolitical as well as scientific benefits of
    AITRP are significant. Many FIC trainees represent the future
    scientific leadership of their countries.
    What could be accomplished in the future with additional funds
        With additional funds, FIC would strengthen its new programs
    created in consultation with Congress to meet other global priorities--
    emerging and re-emerging infectious diseases; population and health;
    environmental and occupational health; and biodiversity. The objective
    would be to increase the capacity of U.S. institutions and foreign
    counterparts to (1) identify risk factors and develop prevention
    strategies for new and emerging pathogens, such as drug resistant forms
    of tuberculosis and streptococcus; (2) improve maternal and perinatal
    health through biomedical research and increase demographic and
    behavioral research capabilities; (3) reduce chronic diseases through a
    greater understanding of the adverse effects of exposures to
    environmental chemicals and other agents; and (4) examine the potential
    therapeutic properties of plants and microorganisms derived from rain
    forest and other natural ecosystems.
               national institute on alcohol abuse and alcoholism
    Accomplishments
        Genetics.--An important benchmark in the history of alcoholism
    research was the demonstration that a significant portion of the
    susceptibility to alcoholism is inherited. NIAAA scientists are
    searching for the relevant genes using family studies, genetic
    research, and techniques of molecular biology. Initial findings in
    NIAAA's genetics research have identified promising chromosomal
    locations relating to alcoholism, colloquially referred to as ``hot
    spots.'' The hot spots that may influence the development of alcohol
    dependence are located on chromosomes 1, 4, 7, and 16. Other identified
    locations on chromosomes 1 and 4 suggest a genetic basis for factors
    that may provide protection from the development of alcoholism. Genes
    influencing a brain wave deficit pattern may link to areas on
    chromosomes 2, 6, and 8.
        Fetal alcohol syndrome (FAS).--Maternal alcohol consumption can
    induce congenital defects, growth retardation, learning disabilities,
    and other behavioral deficiencies in a fetus. NIAAA was responsible for
    establishing the fact that FAS is caused by alcohol and for galvanizing
    efforts to alert women and the medical community to the dangers of
    drinking during pregnancy. Recent research on motor training and how it
    affects the child's ability to learn has implications for overcoming
    deficits resulting from fetal alcohol exposure. Additional recent
    findings delineating the mechanism of cell injury from alcohol-induced
    free radicals yields the promise of developing treatments that use free
    radical scavengers or antioxidants to ameliorate or prevent FAS.
    Expanding research in FAS will contribute to early identification and
    treatment and help the Nation to deal with a disorder that costs about
    $2 billion per year.
        Medications development.--Based on NIAAA supported clinical trials,
    naltrexone became the first FDA approved medication for the treatment
    of alcoholism in 40 years. This medication has shown impressive results
    in helping the alcoholic to stop drinking. It decreased craving and
    reduced the relapse rate by 50 percent. The development of naltrexone
    in the United States and acamprosate in Europe is based on the
    important convergence of basic neuroscience and clinical research.
    Major advances in cellular and whole brain research are enabling the
    characterization of specific alcohol-mediated changes at both the
    cellular and gross level and facilitating the development of effective
    medications. This success presages a new era in medications
    development.
    What could be accomplished in the future with additional funds
        Genetics.--The next step is to identify the genes located within
    the identified chromosomal hot spots. Additional funding would
    significantly accelerate NIAAA's efforts. Once the genes are
    identified, more effective prevention and treatment medication can be
    designed--yielding meaningful gains for the Nation's health.
        Fetal alcohol syndrome (FAS).--One of the most important goals of
    FAS research is prevention. Previous research has shown that socially
    and economically disadvantaged women continue lo drink heavily despite
    warning labels and other public health efforts. Increased funding would
    greatly expedite our currently planned prevention efforts in this
    community.
        Medications development.--Additional funding would permit NIAAA to
    accelerate clinical trials on the promising medications: naltrexone,
    nalmefene, and acamprosate. Funding will also facilitate the
    development of the recently introduced drug, amperozide. Funds are
    needed to permit the conduct of clinical trials to determine which
    groups of patients are most responsive to naltrexone and to identify
    the benefits and side effects of long-term use. Nalmefene is another
    opioid antagonist with several potential advantages over naltrexone,
    including less liver toxicity and more complete blockage of specific
    brain receptors. Acamprosate has been extensively tested in Europe and
    now under an FDA investigational new drug protocol. NIAAA is providing
    consultation on methodology and trial design to pharmaceutical
    companies planning clinical trials on acamprosate.
                     national institute of nursing research
    Accomplishments
        Pain.--Research shows that gender may play a key role in pain
    relief. A new study demonstrated that women can obtain relief from
    acute pain from kappa-opioids, such as Stadol or Nubain, while men
    receive less benefit from these drugs. Earlier clinical testing of
    kappa-opioids was conducted primarily in men, thus obscuring evidence
    that these painkillers may be a good analgesic choice for treating
    acute pain in women.
        Wound healing.--Chronic wounds such as diabetic ulcers and pressure
    sores can be life-threatening consequences of many diseases and
    conditions. Research in this area has resulted in the development of
    risk assessment measures that have been incorporated into national
    guidelines on the management of pressure ulcers.
        Cognitive functioning.--Research on the disruptive behaviors that
    accompany Alzheimer's disease and other forms of dementia demonstrates
    that cognitive stimulation exercises can be used by family caregivers
    in the home to decrease behavioral problems, improve overall mental
    functioning, and reduce stress for the caregivers. Improvements lasted
    up to 9 months, allowing patients to remain at home longer, with
    greater patient and caregiver satisfaction.
        Heart disease.--Adult heart disease can be influenced by behaviors
    that begin in childhood. An eight-week program to improve health
    behaviors was tested in more than 2,200 children in urban and rural
    schools. Twenty percent of the participants were African-Americans. At
    the end of the study, children in the intervention program showed a
    significant increase in reported physical activity and reductions in
    total cholesterol levels, body mass index, and body fat.
    What could be accomplished in the future with additional funds
        Pain.--Additional funds would allow NINR to involve more
    investigators in research to understand the influence of gender on
    response to pain. Research would focus on issues such as the role of
    hormones and differences in cell receptors and other neurological
    factors. This research has critical implications for future drug
    development and therapy.
        Organ transplantation.--Organ transplantation, an increasingly
    successful procedure, is often accompanied by long-term complications
    and compromised quality of life. With increased funding, NINR would be
    able to develop assessment tools to be used in the home to monitor
    early signs of organ infection and rejection, to determine the status
    of gastrointestinal and heart function after transplantation, and to
    measure exercise capability following transplantation.
        Cognitive impairment.--With additional funding, NINR could engage
    in further clinical and basic studies of (1) the neurobehavioral and
    cognitive effects of dementia, delirium, and confusion, and (2)
    nonpharmacologic approaches to the management of behavioral, physical,
    and functional problems associated with cognitive impairment,
    especially Alzheimer's disease.
        Heart disease.--The burdens of heart disease and stroke remain
    higher for minorities and persons of low socioeconomic status than for
    the overall population. Additional funds would allow NINR to fund
    research to develop national programs tailored to minority groups that
    have not experienced improvements in morbidity and mortality from
    cardiovascular disease.
                          national institute on aging
        Alzheimer's disease is a devastating condition that destroys the
    lives of those who have the disease and disrupts the lives of their
    caregivers. The fastest-growing segment of the U.S. population, those
    over age 85, is also the most susceptible to Alzheimer's disease. The
    Nation could, therefore, face a growing public health crisis unless the
    progression of Alzheimer's disease is slowed or prevented. Research can
    move us closer to this goal at only a small fraction of the estimated
    $100 billion yearly cost of caring for patients with Alzheimer's
    disease.
    Accomplishments
        Research on the basic biology of Alzheimer's disease, such as the
    remarkable series of genetic discoveries of the past few years, has
    resulted in major advances in our understanding of this disease. These
    findings, together with the results of epidemiologic studies, have led
    to the identification of risk factors and of potential protective
    interventions for Alzheimer's disease.
        Epidemiologic studies have suggested that estrogen replacement
    therapy, use of non-steroidal anti-inflammatory drugs (such as
    ibuprofen), and use of anti-oxidants (such as vitamin E) may decrease
    the risk of developing Alzheimer's disease. These promising leads are
    being investigated. Epidemiologic research also has identified
    differences among various ethnic groups in the risk of developing
    Alzheimer's disease. Studies such as these are expected to yield leads
    to other environmental and genetic factors that may account for these
    differences in risk.
        A recently completed clinical trial of people with moderately
    severe Alzheimer's disease showed that the drug selegiline and vitamin
    E, either separately or in combination, may delay important milestones
    such as entry into nursing homes by about 7 months. Such a delay would
    greatly reduce the burden of caring for Alzheimer's disease patients
    and has the potential of saving billions of dollars for nursing home
    care.
        Research results have improved supportive, community-based services
    for Alzheimer's disease patients and their families. Improved behavior
    management techniques have reduced disruptive, agitated behavior in
    Alzheimer's disease patients and have contributed to a decreased use of
    both physical and chemical restraints, leading to a better quality of
    life for patients and caregivers.
        The coexistence of Alzheimer's disease with vascular disease in a
    study population of elderly U.S. nuns was found to result in more
    severe dementia than expected on the basis of Alzheimer's disease
    neuropathology alone. These findings suggested that prevention or
    treatment of vascular disease may delay or reduce the development of
    symptoms in many Alzheimer's disease patients.
    What could be accomplished in the future with additional funds
        We are at the threshold of further discoveries that will lead to:
        Finding additional clues to the genetic or environmental factors
    that may contribute to the development of Alzheimer's disease, and
    improving our ability to predict who is at risk for developing the
    disease.
        Developing safe, effective, and reliable methods of early diagnosis
    for Alzheimer's disease.
        Improving our understanding of factors that contribute to nerve
    cell death in Alzheimer's disease and thereby identifying means of
    preventing onset of symptoms.
        Developing more effective treatments and preventive interventions
    to reduce the tragic impact of Alzheimer's disease on patients and
    their families.
     national institute of arthritis and musculoskeletal and skin diseases
    Accomplishments
        Genetic basis of rheumatoid arthritis and systemic lupus
    erythematosus.--Six distinct genetic regions that control inflammatory
    arthritis were identified by researchers in the NIAMS intramural
    program, who reported that the genetic basis in the inflammatory
    arthritis bore a striking similarity to what is known about the
    genetics of rheumatoid arthritis. Most significantly, researchers have
    located several of the particular genes that affect arthritis
    susceptibility and severity in this animal model. Other genetic studies
    have provided important clues about systemic lupus erythematosus (SLE),
    including the identification of a genetic risk factor for lupus kidney
    disease in African Americans, as well as the localization of a gene
    that predisposes people to SLE. The exciting dimension of this latter
    advance is that it appears in multiple ethnic groups, making it a very
    significant research finding.
        Osteoporosis.--Osteoporosis is the leading cause of bone fractures
    in postmenopausal women and older people in general. Recently,
    investigators have shown that estrogen induces the death of the cells
    responsible for the breakdown of bone. However, the effects of estrogen
    are complex, and since not all women are suitable candidates for
    estrogen replacement, it is important to determine the mechanism of
    estrogen action and to devise alternative therapies. This discovery
    opens up an exciting new avenue of research opportunities for
    investigators to discover whether other drugs can also affect the death
    of the bone-degrading cells, making them potentially useful as bone-
    protection treatments.
        Skin cancer.--In a significant advance in our understanding and
    treatment of skin cancer, scientists have identified the gene involved
    in basal cell (skin) cancers, the most common human cancer. This work
    in genetic medicine identifies a new gene that is important in human
    development as well as tumor suppression, and may lead to novel,
    nonsurgical treatments for basal cell carcinoma.
    What could be accomplished in the future with additional funds
        Total hip replacement.--Total hip replacement provides pain relief,
    improves quality of life, and results in economic benefits. However,
    osteolysis, the disappearance of bone around the implant, can result in
    significant pain, implant loosening, and the need for additional
    surgery. Research to reduce osteolysis will improve the long-term wear
    of implants and result in tremendous cost savings.
        Low back pain/repetitive motion disorders.--Seventy to 85 percent
    of Americans will develop back pain; and this problem may be recurrent
    and disabling. The term ``repetitive motion disorders'' describes a
    constellation of conditions that primarily affect the soft tissues,
    including nerves, tendons, and muscles. Both of these conditions have a
    significant impact in the workplace, resulting in pain and disability,
    as well as economic costs. The NIAMS has issued Program Announcements
    in both of these areas, signaling our interest in increased research
    focus to address these public health problems.
        Wound healing.--The inability of certain wounds to heal in a timely
    fashion is the cause of great disability and immobility in the United
    States, particularly among the elderly and those suffering from certain
    injuries or diseases including spinal cord injury and diabetes
    mellitus. Additional research is needed on all aspects of chronic
    wounds to develop new and effective treatments.
        Osteoarthritis.--Osteoarthritis, the most prevalent disease of the
    joints, takes a staggering toll in human suffering and economic costs.
    Additional resources would allow enhanced research on the biological
    responses of cartilage and bone to various mechanical forces and how
    those responses affect the onset and progression of osteoarthritis. The
    identification of ways in which mechanical forces lead to tissue damage
    could open new possibilities of drug therapy for osteoarthritis
    patients.
        Bone and the immune system.--Recent advances in understanding bone
    remodeling indicate that the regulation of bone formation and
    resorption involves a number of factors that are also important in the
    regulation of the immune system and the system that controls blood cell
    formation. The NIAMS is co-sponsoring a workshop to identify research
    opportunities ripe for investment.
                      national institute of mental health
    Accomplishments
        Throughout its fifty years, the NIMH has conducted and supported
    research that has made possible the development and use of many new
    treatments for mental illnesses--where previously there were no
    effective treatments. This time span saw the first medications that
    could alleviate mental illness, establishing that these illnesses are
    biological in origin and providing a powerful weapon against
    stigmatization of patients.
        Effective treatments have greatly improved the lives of people with
    mental illness and have also produced significant economic benefits.
    For example, lithium therapy for manic depression has saved the U.S.
    economy almost $6 billion per year since 1970; and clozapine
    maintenance treatment for schizophrenia saves approximately $1.4
    billion annually, primarily by preventing hospitalizations of the
    estimated 60,000 patients receiving clozapine.
        Continuing improvements in psychotherapies have replaced or
    augmented pharmacologic treatments for some patients. In 1990, one
    mental illness, unipolar major depression, was the leading cause of
    disability. This disability has a major and growing impact on both the
    direct costs of health care and the loss of economic productivity: it
    is a potent incentive to accelerate efforts to reduce the burden of
    mental illness.
        Decades of painstaking research have brought neuroscientists to the
    threshold of understanding the structure and operation of that most
    complex of human organs, the brain. To understand cognition, emotion,
    and what goes wrong to produce the brain disorders that we call mental
    illnesses will require progress at the levels of molecules and genes,
    cell, circuits, and psychology.
        This is an enormous challenge because mental illnesses don't appear
    to have any single cause; rather they result from multiple
    vulnerability genes acting at different times during brain development
    combined with influences of environmental factors. Using genetic
    engineering and cell recording techniques in mice, researchers have
    begun to describe the underlying biology that constitutes the molecular
    basis of memory formation in the brain. Other scientists have made
    major advances in discovering how the brain functions in emotions such
    as fear; this progress will revolutionize our understanding of the
    neurobiology of emotion and how best to treat severe anxiety disorders,
    such as panic disorder and obsessive-compulsive disorder.
        Another group of scientists, using advanced molecular techniques
    and basic behavioral science, have identified a gene named clock, that
    controls daily biological rhythms. This work will help understand human
    problems ranging from mood disorders, such as depression, to sleep
    disorders to jet lag. A recent study, which illustrates the potential
    usefulness of neuroimaging techniques for understanding mental
    illnesses, found that people with schizophrenia had a decreased density
    of dopamine D1 receptors in the prefrontal cortex and that the extent
    of decrease correlated with the severity of the illness.
    What could be accomplished in the future with additional funds
        Expansion of research on the complex genetics of the major mental
    disorders would lead to a much more complete understanding of the roles
    of genetic factors in mental illnesses--schizophrenia, schizoaffective
    disorder, manic depressive illness, major depression, autism, panic
    disorder, and obsessive-compulsive disorder--which would lead, in turn,
    to clearer insights into the origins, optimal treatments, and ways to
    prevent these illnesses.
        Increased emphasis on the use of modern molecular and integrative
    neurobiology to understand the basis of mental disorders would discover
    new targets for novel therapeutic agents.
        Acceleration of research on the application of modern genetic
    techniques in animal models would enable scientists to understand how
    the brain processes cognition (including memory) and emotion, while
    neuroimaging techniques will allow scientists to translate the findings
    of this animal research into humans.
        Expansion of research on the prevention and treatment of mental
    disorders in children would yield critically needed information on the
    best and safest ways to reduce the terrible consequences of mental
    illness for our youngest citizens.
        Initiation of clinical trials of new drugs recently approved for
    the treatment of manic depressive illness and psychotic disorders would
    allow NIMH to advise mental health care providers on the most effective
    treatments for each type of patient.
        Finally, research on imaging techniques could lead to an
    integration of pharmacologic and behavioral approaches to treatment.
                 national institute of general medical sciences
    Accomplishments
        The multi-billion dollar biotechnology industry is a consequence of
    decades of NIGMS investment in basic research. This research has
    provided an understanding of the basic biological processes of living
    cells, a knowledge of the structure and function of the compounds that
    make up the fabric of life, and tools for synthesizing and evaluating
    drugs. The result has been the production of many new drugs, including
    human growth hormone, new orally active asthma medications; and EPO,
    which boosts production of red blood cells in individuals undergoing
    chemotherapy. A striking demonstration of the contribution of NIGMS-
    sponsored research to the development of new drugs comes from the
    patent literature, which shows that a significant percentage of patents
    for new drugs cite NIGMS-funded research as providing essential
    information leading to the patents.
        Advances in chemical synthesis have led to drugs that are safer for
    patients and are effective at lower dosages.
        Progress in rational drug design enables scientists to use the
    structures of the enzymes needed by disease organisms to design small
    compounds that will fit into, and jam the action of the enzymes. The
    protease inhibitors that have been so successful in treating AIDS were
    the result of an understanding of protease structure and function
    developed over several decades.
        Achievements in identifying the pathways by which signals are
    transmitted from the outside of the cell to the cell nucleus, resulting
    in a change in gene expression, now make it possible to design drugs to
    block or enhance signal transmission.
    What could be accomplished in the future with additional funds
        The development of new targets for drug design and new approaches
    to identifying and creating drugs depends on additional funds to
    stimulate research. There are several areas that would particularly
    benefit.
        One is increasing understanding of the key elements in the cell
    that can be used as targets for the control of disease. For example,
    there is growing evidence that compounds containing sugars may be
    important in many cellular activities and that many possible
    therapeutics could be realized by targeting these compounds. Because of
    many difficulties in working with these materials, progress has been
    slow. However, new developments in chemical synthesis have increased
    the likelihood that novel therapeutics will emerge in the near future,
    if resources are available to encourage this effort.
        Further, although knowledge of detailed molecular structure has
    become an effective tool in the development of new drugs, it still has
    many shortcomings. An increased effort is needed to generate improved
    methods for the determination of the structure of target molecules, for
    the generation of improved theoretical methods aimed at the design of
    molecules, and for a better understanding of how drugs get into the
    cell and interact with their targets.
            national institute of child health and human development
    Accomplishments
        The research of the National Institute of Child Health and Human
    Development is distinguished by its sweep across the life span. The
    oldest questions of life are being studied using the latest tools of
    biomedical research and a multidisciplinary approach. Significant gains
    have been made in reducing infant mortality, birth defects, and in
    transmission of deadly infections.
        Since the Institute was established in 1962, the Nation's infant
    mortality rate has declined by 70 percent. This decline is clearly
    linked to NICHD research advances, particularly to improvements in
    treating respiratory distress syndrome and other breathing problems in
    newborns and in reducing sudden infant death syndrome.
        Intense study of preeclampsia--the most common fatal condition of
    pregnancy--has challenged standard treatments and led to new insights
    about uterine biology.
        Research has led to promising opportunities to affect the factors
    involved in premature delivery, a condition associated with low birth
    weight babies, expensive prenatal care, and often permanent
    disabilities.
        Mother-to-child transmission, which accounts for the vast majority
    of HIV infections in infants, has been markedly reduced. NICHD research
    also developed a vaccine against Hib meningitis that has nearly
    eliminated the disease, which was the leading cause of acquired mental
    retardation.
    What could be accomplished in the future with additional funds
        Prevention of serious conditions, particularly those that occur
    during early development, in the first months of life or during
    childhood, is a high Institute priority. A recent White House
    Conference on the Brain and Early Learning coined the phrase, ``the
    first few years last forever.'' NICHD scientists would add the phrase,
    ``prevention is forever.'' Additional funds could help fund studies of
    early development that may hold the key to a healthy baby free of birth
    defects.
        Building on basic studies, clinical trials could be undertaken to
    develop a treatment for infections that add to the risk of premature
    labor and delivery of low birth-weight babies. Increased spending would
    speed the development of topical microbicidal agents to prevent the
    transmission of sexually transmitted diseases (STDs), including AIDS.
        Additional funds would speed progress toward vaccines against
    damaging and life-threatening pathogens such as pertussis, typhoid
    fever, shigellosis (dysentery), E. Coli M 0157, antibiotic resistant
    pneumococcus, and tuberculosis.
        The development of additional sophisticated animal models could
    speed our understanding of critical moments in development, as well as
    the timing and success of genetic changes. Intensified research on
    human fertility, prevention of birth defects, including genetic
    diseases and various developmental disabilities such as mental
    retardation or autism, could improve the prevention of many human and
    medical tragedies.
        Increased research into specific areas of the brain, as well as
    rapid intervention in children with early signs of learning disorders
    could help prevent a lifetime of educational problems.
        Many adult diseases, such as osteoporosis, obesity and diabetes,
    are associated with poor childhood nutrition. Increased funding would
    enhance our efforts to develop the means in childhood to prevent these
    serious adult diseases.
        Injury prevention studies could lead to reduced disabilities and
    the development of new high technology assistive devices could
    dramatically restore function and mobility to many with physical
    disabilities.
                             national eye institute
    Accomplishments
        Age-Related Macular Degeneration (AMD).--AMD is the most common
    cause of severe visual impairment in the U.S. approximately 1.7 million
    Americans have damaged eyesight from AMD and 100,000 of them are blind
    from the disease. The prevalence of decreased vision from AMD is
    expected to rise to 6.3 million by the year 2030. Recently, many of the
    genes involved in retinal degeneration have been identified or
    localized such as one type that afflicts younger people and causes
    tunnel vision and night blindness. Vast strides have been made in
    understanding the genetic basis of this specific form of the disease
    with over 78 gene defects having been identified. In certain forms of
    retinal degeneration, NEI researchers have already placed genes into
    the retinas of laboratory animals. Human treatment strategies based on
    these experiments are under development.
        Replacing diseased retinal cells with healthy ones by tissue
    transplantation has also been a promising area of research. Groups of
    NEI-supported scientists have successfully transplanted healthy retinal
    cells as replacements for diseased cells in animals.
        Other, recent studies that have shown promise involve a class of
    chemicals called biological survival factors which delay cell
    degeneration in AMD and other retinal diseases.
        Diabetic retinopathy.--Diabetic Retinopathy is one of the most
    important causes of sight loss and a leading complication of diabetes.
    It accounts for 12 percent of all new cases of blindness each year in
    the U.S. Past research advances have documented the role of a specific
    enzyme and growth factors as possible cause of blindness from diabetic
    retinopathy. New research on the cell biology of the retina has shown
    that newly discovered growth factors might play a role in the
    development of abnormal and destructive blood vessels that occur later
    in the course of the disease. Additionally, the development of new
    drugs and molecular genetic techniques to block the enzymes thought to
    be a major cause of diabetic retinopathy complications, and to prevent
    abnormal blood vessel growth, hold great promise for the future.
    What could be accomplished in the future with additional funds
        Age-related macular degeneration (AMD).--Now that scientists have
    localized and identified genes causing various forms of retinal
    degeneration, the study of the cellular and molecular basis of the
    disease can be greatly accelerated. Additionally, NEI scientists can
    now try to identify genes that will help rescue the retina, which, if
    possible, might help prevent much of the visual loss from the later
    stages of AMD.
        Additionally, based on the above research accomplishments, there is
    a real opportunity to develop human treatment strategies. These
    clinical trials will include evaluation of agents that relayed abnormal
    blood vessel growth, cell transplants to replace the diseased retina or
    portions of it, and, potentially, gene therapy to replace defective
    genes. As the ``baby boomers'' age and a higher percentage of Americans
    reach age 60, more older people will become blind from AMD than from
    glaucoma and diabetic retinopathy combined. In addition to the obvious
    quality of life issues faced by those with age-related macular
    degeneration, effective treatment of even 25 percent of all cases could
    lead to significant dollar savings to society and decreases in the
    number of social security disability payments.
        Diabetic retinopathy.--New drugs to inhibit aldose reductase and
    protein kinase C enzymes whose malfunctioning is thought to be
    responsible for diabetic retinopathy, need to be further characterized
    and developed as therapeutic agents and tested in nationwide clinical
    trials. Likewise, animal studies of inhibitors of the growth factors
    that appear in later stages of retinopathy, first, need to be tested in
    animals and then, if successful, evaluated in human clinical trials.
        In the U.S., these two diseases--age-related macular degeneration
    and diabetic retinopathy--account for over 50 percent of all visual
    disability and blindness. Diseases of the eye cost Americans over $40
    billion annually, so any treatment advances in these two areas could
    save billions.
              national institute of environmental health sciences
    Accomplishments
        Risk Assessment for the 21st Century.--Human exposure standards are
    calculated based on a combination of toxicological test results,
    epidemiology studies, and mathematical modeling. The NIEHS, under the
    auspices of the National Toxicology Program (NTP), has assumed the
    leadership role in developing risk assessment methodologies that
    incorporate our evolving knowledge of the molecular mechanisms and
    cellular pathways by which environmental toxicants exert their effects.
    As these techniques are refined, they will lead to more rational, more
    precise risk assessments that protect human health without the need for
    default safety factors not founded on scientific data. New approaches
    also open the possibility of developing novel, inexpensive, more rapid
    animal assays for environmental influences on diseases such as cancer.
        Individual responsiveness to environmental exposures.--Exciting
    work supported in part by the NIEHS has identified how individual
    differences in inherited genes can dramatically alter a person's
    susceptibility to environmental toxicants. Examples include a
    carcinogen metabolizing gene that renders an individual who smokes more
    likely to develop urinary bladder cancer, a vitamin D receptor gene
    that increases a man's risk of prostate cancer, and a detoxifying
    enzyme that renders Asians more susceptible to the nerve gas, Sarin,
    than are Caucasians.
    What could be accomplished in the future with additional funds
        Environmental genome.--The NIEHS is planning an Environmental
    Genome Project to provide a systematic analysis of genes critical to
    the development of environmentally-associated diseases. Additional
    funding would be used both to get this project underway earlier and to
    increase the power of the program by surveying more people and
    obtaining information on a wider variety of environmentally-related
    genes.
        Prevention research.--All NIEHS-supported research has as its basis
    the goal of preventing disease development. Several important avenues
    are being explored that could benefit from increased funding. One is
    strengthening epidemiological research in linking diseases to
    environmental exposures. This increased capability would be possible by
    expanding exposure assessment capability in the U.S. population, by
    developing biomarkers of exposure and effect, and by incorporating our
    evolving knowledge of how individual differences affect responses to
    environmental exposures. These individual susceptibilities would
    include both genetic susceptibilities and susceptibilities based on
    developmental age, e.g., how infants and children serve as a uniquely
    vulnerable subpopulation. Another important avenue is expanded
    prevention research on childhood exposures leading to asthma, and
    development of culturally sensitive strategies for conducting
    population studies. Additional funding would allow expanded efforts in
    these critical research areas.
        Complex mixtures.--Traditionally health effects of chemicals have
    been assessed individually, even though people are exposed to many
    different compounds. A major flaw of risk assessment science is its
    inability to predict the expected health effects arising from a
    multiplicity of exposures. To address this information deficiency, the
    NIEHS is releasing an RFA to recruit university scientists to address
    this problem. Molecular toxicologic approaches are being used to
    identify those mixtures which may pose the greatest human health risk.
    For example, two transgenic mouse models are currently being assessed
    which hold the promise of rendering carcinogenicity results in 6 months
    at a fraction of the cost of a traditional 2-year exposure assay. With
    more funding, the NIEHS would be able to fund a greater number of
    grants in response to its RFA.

                               clinical research

        Senator Specter. Dr. Varmus, one concluding question from
    me, and then I will yield again to my colleague, Senator
    Cochran.
        Dr. Varmus. Yes.
        Senator Specter. We hear complaints about an insufficient
    emphasis on clinical research. Do you think there is any basis
    to that complaint?
        Dr. Varmus. There is certainly a basis for worrying about
    it. As you know, I have been hearing about it ever since I have
    assumed my responsibilities here. About 2 years ago, I
    established a clinical research panel, composed of
    distinguished leaders in medical research from around the
    country and chaired by Dr. David Nathan from the Dana Farber
    Cancer Center. That group has studied many of the issues that
    have been raised by those concerned about the status of
    clinical research.
        One of the things that they have found is that the NIH is
    strongly supporting clinical research, perhaps in excess of
    what had been anticipated by critics. For example, about 37
    percent of our grant dollars and about 28 percent of our grants
    go to support clinical research.
        We are concerned about recruitment and training of clinical
    investigators, especially given the burdens that medical
    students experience now. And we have devised a number of new
    training mechanisms, some of which are already implemented, to
    ensure that we have a healthy new cohort of clinical
    investigators.
        We are also looking at the status of places where clinical
    research is done, trying to improve the way in which the
    general clinical research centers work and to improve both the
    facilities and governance of the clinical center at the NIH. We
    believe that many of the areas of concern are being addressed.
    Life is not perfect, but we think the situation is healthier
    than some of our critics may have thought.
        Senator Specter. Senator Cochran.

                       reading development and disorders

        Senator Cochran. Mr. Chairman, I appreciate your
    recognition of me again.
        When we had our hearing with Secretary Riley, Secretary of
    Education, I asked a question about a study that had been done
    under the provisions of the Health Research Extension Act at
    the National Institute for Child Health and Human Development
    into research affecting the capacity of children to learn--
    particularly to learn to read--and how this affected our
    efforts to provide education and resources for those who may be
    difficult to teach or have learning disorders of some kind or
    another. And it was fascinating to me that we have spent over
    $100 million on this research now, and nobody at the Department
    of Education had bothered to read the findings or to find out
    what had been learned as a result of this important research
    that we had funded and had been undertaken.
        So I had asked Dr. Duane Alexander to give us a report so
    we could put it in the record at this hearing. And I just want
    to point out that he has prepared a written response to my
    inquiry, which I ask that we put in the record.
        [The information follows:]
                       Reading Development and Disorders
        I think that it is important to point out that our intensive
    research efforts in reading development and disorders is motivated to a
    great extent by our seeing difficulties learning to read as not only an
    educational problem, but also a major public health issue. Simply put,
    if a youngster does not learn to read, he or she simply is not likely
    to make it in life. Our longitudinal studies that look at children from
    age five though their high school years have shown us how tender these
    kids are with respect to their own response to reading failure. By the
    end of the first grade, we begin to notice substantial decreases in the
    children's self-esteem, self-concept, and motivation to learn to read
    if they have not been able to master reading skills and keep up with
    their age-mates. As we follow them through elementary and middle school
    these problems compound, and in many cases very bright youngsters are
    deprived of the wonders of literature, history, science, and
    mathematics because they can not read the grade-level textbooks. By
    high school, these children's potential for entering college has
    decreased to almost nil, with few choices available to them with
    respect to occupational and vocational opportunities.
        In studying approximately 10 thousand children over the past 15
    years, we have learned the following:
        At least 20 percent, and in some states 50 to 60 percent, of
    children in the elementary grades can not read at basic levels. They
    can not read fluently and they do not understand what they read.
        However, the majority of these children--at least 90 to 95
    percent--can be brought up to average reading skills if:
      --(A) children at-risk for reading failure are identified during the
            kindergarten and first grade years and,
      --(B) early intervention programs that combine instruction in
            phonological awareness, phonics, and reading comprehension are
            provided by well trained teachers. If we delay intervention
            until nine-years-of-age (the time that most children are
            currently identified), approximately 75 percent of the children
            will continue to have reading difficulties through high school.
            While older children and adults CAN be taught to read, the time
            and expense of doing so is enormous.
        We have learned that phonological awareness--the understanding that
    words are made up of sound segments called phonemes--plays a causal
    role in reading acquisition, and that it is a good predictor because it
    is a foundational ability underlying basic reading skills.
        We have learned how to measure phonological skills as early as the
    beginning of kindergarten with tasks that take only 15 minutes to
    administer--and over the past decade we have refined these tasks so
    that we can predict with 92 percent accuracy who will have difficulties
    learning to read.
        The average cost of assessing each child during kindergarten or
    first grade with the predictive measures is between $15 to $20
    depending upon the skill level of the person conducting the assessment.
    This includes the costs of the assessment materials. If applied on a
    larger scale, these costs may be further decreased.
        We have learned that just as many girls as boys have difficulties
    learning to read. The conventional wisdom has been that many more boys
    than girls have such difficulties. Now females should have equal access
    to screening and intervention programs.
        We have begun to understand how genetics are involved in learning
    to read, and this knowledge may ultimately contribute to our prevention
    efforts through assessment of family reading histories.
        We are entering very exciting frontiers in understanding how early
    brain development can provide us a window on how reading develops.
    Likewise, we are conducting studies to help us understand how specific
    teaching methods change reading behavior and how the brain changes as
    reading develops.
        Very importantly, we continue to find that teaching approaches that
    specifically target the development of a combination of phonological
    skills, phonics skills, and reading comprehension skills in an
    integrated format are the most effective ways to improve reading
    abilities.
        At the present time, we have held several meetings with officials
    from the USDOE and have discussed how these findings can be used across
    the two agencies. As an example of this collaboration, NICHD and USDOE
    have been developing a preliminary plan to determine which scientific
    findings are ready for immediate application in the classroom and how
    to best disseminate that information to the Nation's schools and
    teachers.

                    summary statement of dr. duane alexander

        Senator Cochran. And I would like to ask him to make
    whatever comments that he thinks would be appropriate at this
    point in connection with that research and the need for
    continued funding for this kind of inquiry--whether there is a
    payoff here in terms of improved health and quality of life of
    our younger generation.
        Doctor.
        Dr. Alexander. Senator Cochran, I appreciate your interest
    in this topic. You are quite correct, over the past roughly 15
    years, the Institute has invested, at the request of the
    Congress, approximately $100 million, studying over 10,000
    children in a longitudinal way for their reading ability and
    disability.
        What we have learned about this problem that affects not
    just education, but also the public health and welfare because
    of the impact on the children and on their ability to learn to
    read, as evidenced by longer-term problems and limitation of
    educational opportunity, lifetime skills and increased
    behavioral and delinquency problems, is that approximately 20
    percent of children in the elementary schools overall, are
    basically not able to read. And in some areas this ranges even
    higher--50 percent or more. We have done studies that look at
    this population, in terms of our ability to identify them and
    intervene.
        What we have found is that we are able to identify, by a
    screening technique in kindergarten age group, this
    approximately 20 to 25 percent of children who are at high risk
    for a learning disability, particularly for learning to read.
    And if we are able to identify them at this age and intervene
    with a program that is based on phonologic awareness, teaching
    phonics, and understanding of written text by trained teachers,
    we are able to achieve normal reading levels in about 90 to 95
    percent of these children. This makes an enormous difference in
    their capabilities, both academically and socially as well.
        This screening test is available now. We are able to
    administer it at a cost of $15 to $20 per child, select out the
    population at highest risk, focus our intervention on them, and
    produce pretty impressive results.
        What we are trying to do now is demonstrate this on a
    larger scale in educational systems, and demonstrate whether,
    in fact, we can apply it in a broader way and show that it will
    be effective in a classroom setting.
        We have been in communication with our colleagues in the
    Department of Education about the implications of these
    findings, for training of teachers and teachers in education
    colleges, as well as the actual application in the classroom of
    these findings.

                           grant awards to all states

        Senator Cochran. Thank you very much, Dr. Alexander. And
    let me commend you for the excellent report and the fine work
    that is being done in this research.
        Dr. Varmus, I just want to point out, too, that Congress
    declared the 1990's as the decade of the brain, and brain
    disorder research was something that you discussed in your
    opening comments. The National Institute of Neurological
    Disorders and Stroke has been at the forefront of this
    research, and I think it is very impressive to see the results.
    And I appreciate your reporting that to us.
        We are interested, too, in helping to make sure that
    research dollars, to the extent that it is possible to
    effectively spend them in other parts of the country that do
    not usually get the big-dollar research investments--States
    like Mississippi--are treated fairly. I know there is this
    program, the IDEA program. My question is, is it worth
    continuing to make an effort to disburse some of these dollars
    to States like ours, where we can see effective use of those
    dollars made in medical research?
        Dr. Varmus. We believe there is talent in all States, and
    sometimes it is necessary for NIH to undertake special programs
    to help people who live in those States to be more familiar
    with the NIH system. We have two major programs that address
    some of those concerns. One is the IDEA program; the other is
    the AREA program. Two other programs also have a minor impact.
        With respect to your own State, you will be pleased to know
    that in the current fiscal year there will be at least five,
    and perhaps more, AREA awards going to Mississippi.
        Senator Cochran. Thank you very much.
        Thank you, Mr. Chairman.

                               clinical research

        Senator Specter. Thank you very much, Senator Cochran.
        Dr. Varmus, we will have quite a few questions to submit
    for the record, because we do want to move along to the next
    panel as soon as I yield to our distinguished ranking member,
    Senator Harkin. We have some questions specifically on autism.
    We have a variety of questions which we will submit for the
    record. And I would like some further specification on the
    issue of clinical research.
        I note that our 1995 committee report requested NIH to act
    on the recommendations of the Institute of Medicine report with
    respect to the crisis on clinical research. And we requested
    NIH to use 1 percent transfer authority to implement the IWIMP-
    recommended initiatives, which was never done.
        Last year the concern was expressed about, quote, ``very
    few of the recommendations have been implemented.'' And you
    said that NIH would take action. I am advised by staff that
    that has not occurred.
        And the NIH advisory panel, 3 years ago, the clinical
    advisory group to provide advice and guidance on the issue of
    clinical research, related to the IWIMP panel that the group is
    now entering its final year of a 3-year tenure. But as I am
    advised, to date, only draft and interim reports have been made
    and no final recommendations have been offered to the NIH and
    no implementation of any action has occurred.
        Dr. Varmus. Mr. Specter, I beg to differ. There are a
    number of actions recommended by the committee that have been
    taken. The committee is going to report to me in final form in
    the fall.
        Senator Specter. Well, what has been done?
        Dr. Varmus. There has been a new program instituted at the
    NIH for training clinical investigators. There has been the
    recommended survey--actually a prospective survey of our
    support of clinical investigation. And we are designing other
    new programs for training of clinical investigators.
        Some of the objectives are in motion, but they are in
    response to recommendations that will take some time.
        Senator Specter. Well, would you give those to us in
    writing, Dr. Varmus?
        Dr. Varmus. Yes; they are available.
        Senator Specter. We have to move on to the next panel. But
    I would like to get the specifics and your response to the
    written questions.
        Dr. Varmus. I would be very pleased to provide them.
        [The information follows:]
                  NIH Progress in the Clinical Research Arena
        Over the past year, several steps have been taken to strengthen
    clinical research at the National Institutes of Health (NIH). Some of
    these initiatives are in response to preliminary recommendations made
    in December 1996 by the NIB Director's Clinical Research Panel (CRP).
    Others have been developed independently by the Institutes, Centers and
    Divisions (ICDs). Highlights of these initiatives are summarized below.
    1. The CRP developed the following definition of clinical research:
        Patient-Oriented Research: Research conducted with human subjects
    (or on material of human origin such as tissues, specimens and
    cognitive phenomena) for which an investigator (or colleague) directly
    interacts with human subjects. This area of research includes:
    Development of new technologies; Mechanisms of human disease;
    Therapeutic interventions; and Clinical trials.
        Epidemiologic and Biobehavioral Studies;
        Outcomes Research and Health Services Research.
    2. Assessment of the extent of NIB's support for clinical research
            through extramural funds
        Based on the definition above and in response to a CRP
    recommendation, the Office of Extramural Research (OER) has developed a
    database to code NIH-supported clinical research awards and to track
    funding of clinical research prospectively. The data collected for
    extramural competing awards during fiscal year 1996, including clinical
    trials as a subset, show that 27 percent of such awards and 38 percent
    of the funds supported clinical research projects. Comparable data on
    clinical research for noncompeting awards has not been collected, but
    are believed to reflect similar levels for clinical research.
    3. The General Clinical Research Centers (GCRCs)
        (a) In fiscal year 1997, the National Center for Research Resources
    (NCRR) will provide the network of GCRCs and other related activities
    with a total of $157 million. The NCRR made an award to one new GCRC in
    fiscal year 1996 at Howard University. Research will be related to
    diseases that particularly affect African Americans. In addition, NCRR
    funded a new satellite site at Children's Hospital in Seattle,
    Washington.
        (b) In response to a CRP recommendation, changes to the GCRC
    Guidelines have been approved to encourage a leadership role by each
    GCRC in coordinating many vital clinical research functions in its
    institution.
        (c) The NCRR is committed to the training of clinical researchers
    at GCRCs, through the Clinical Associate Physician (CAP) program
    (established in 1974), the Minority Clinical Associate Physician (MCAP)
    program (established in 1991) and the Clinical Research Scholar (CRS)
    program (established in 1996). The most recent analysis of these
    programs shows that its graduates have been successfully in competing
    for research funds from NIH and other Federal agencies as well as the
    private sector.
    4. The Warren Grant Magnuson Clinical Center (CC)
        (a) The CC is currently undergoing significant governance and
    management changes as recommended in a 1996 report entitled
    ``Revitalizing the NIH Clinical Center for Tomorrow's Challenges.''
    These include appointment of a Board of Governors, implementation of a
    strategic plan, more efficient financial planning, improved procurement
    and information systems and initiation of novel patient recruitment
    strategies.
        (b) Planning continues for construction and utilization of a new
    hospital (the Mark O. Hatfield Clinical Research Center), for which
    Congress has authorized funding.
        (c) Proposals and mechanisms for increased intramural/extramural
    collaborations at the CC are being developed with the advice of a high-
    level internal Committee on Extramural/Intramural Investigations.
    Membership of the committee includes ICD Directors, Scientific and
    Clinical Directors. Its specific charges are to explore opportunities
    for interactions between extramural and intramural investigators in the
    CC, to devise mechanisms to facilitate such interactions, and to
    recommend ways in which the Clinical Research Center can support these
    goals.
        (d) Each Institute has developed its own Internal mechanism to
    ensure rigorous scientific review of clinical research protocols prior
    to submission to an NIH Institutional Review Board, thus ensuring that
    only studies of the highest merit and significance are undertaken.
        (e) In February 1997 an internal NIH Committee on the Recruitment
    and Career Development of Clinical Investigators, composed of
    intramural clinical researchers, offered specific recommendations to
    NIH management to improve clinical research activities on the NIH
    campus. Some of the most important recommendations related to increased
    resources for clinical research, and improvements in tenure and
    promotion policies that will give added weight to training and clinical
    service activities by clinical researchers, and provide more time for
    consideration of a clinical investigator for tenure. The Committee also
    recommended that active clinical researchers serve on Boards of
    Scientific Counselors and ICD Promotion and Tenure Committees, and the
    establishment of an intramural Clinical Research Revitalization
    Committee to report to the Deputy Director for Intramural Research and
    the Associate Director for Clinical Research.
        These recommendations are currently under active review by NIH
    management, and are pending implementation.
    5. Review of Clinical Research Applications
        Fair and competent review of clinical research applications, as
    with all applications, is of fundamental importance to funding the best
    science. The issues surrounding the review of clinical applications are
    currently under discussion by both the Division of Research Grants
    (DRG) under its new Director, and by a working group of the Peer Review
    Oversight Group (PROG).
        (a) Dr. Ellie Ehrenfeld, the Director, DRG, has made the review of
    clinical research a major focus since her arrival at NIH, and has
    solicited the input of the clinical research community. She has also
    recruited a clinical researcher from academia to spend the next year in
    DRG to work on these issues.
        (b) A working group of the NIH Peer Review Oversight Group (PROG)
    has been formed to develop an evaluation procedure for determining
    whether scientific peer review panels that review clinical grant
    applications are adequately constituted to provide competent review of
    clinical research proposals. Specifically, the Group's initial activity
    focuses on the clinical expertise on the various review panels.
        (c) The National Cancer Institute (NCI) has recently implemented an
    Accelerated Executive Review (AER) that allows a broader emphasis on
    funding new and competing research grant applications. In fiscal year
    1996, the NCI Executive Committee reviewed 51 applications under the
    AER (31 on basic research and 20 on patient-oriented research [POR]),
    and recommended 23 awards, for a total cost of $6.7 million, nine of
    which were for POR.
        (d) The National Institute of Allergy and Infectious Diseases
    (NIAID) is applying newly-developed, streamlined procedures of grants
    management, including electronic peer review and early Council review,
    to expedite the evaluation and funding of clinical research grant
    applications.
    6. Research Training and Career Development for Clinical Researchers
        (a) A new one to two-year Clinical Research Training Program (CRTP)
    will start in the NIH intramural program in the summer of 1997. Nine
    Clinical Research Scholars were chosen from 78 third-year medical and
    dental student applicants. A senior NIH clinician-researcher will
    mentor each Scholar through an individualized research program
    combining clinical protocols and laboratory studies. Scholars will also
    complete the NIH Core Course in Clinical Research, which is designed to
    provide basic knowledge and skills to new clinical investigators at
    NIH.
        (b) The NIH is exploring a number of possible mechanisms to enhance
    the quality of clinical research training and career development.
    Projects undergoing discussion and design that could be funded within
    the fiscal year 1998 President's Budget request include the following:
        (i) National Research Service Award (NASA) Research Training
    Grants.
        The NIH is considering the expansion of clinical research training
    for medical and dental students supported by Institutional NASA Short-
    Term Research Training Grants (T35) and similarly training Ph.D.s in
    clinical research using NASA Institutional Research Training Grants
    (T32) and Individual Postdoctoral Fellowships (F32).
        A program similar to the NIGMS MSTP program is being considered for
    developing research training for medical students, leading to the award
    of further advanced degrees. Educational programs of this type are
    already in place at certain institutions such as Johns Hopkins
    University and Yale.
        (ii) Clinical Research Mentored Scientist Development Award
    Institutional (K12).
        This award will allow institutions to attract highly qualified and
    highly motivated candidates into a training program in patient-oriented
    research. Such a program would offer courses in epidemiology,
    biostatistics, bioethics, experimental design and others, as
    appropriate. The institution may also offer short rotations with
    several different faculty members so that candidates can explore a
    number of clinical studies before they select a project. This program
    would be designed to recruit clinicians into a patient-oriented
    research fellowship either at the end of their general medical or
    surgical residency or during the research fellowship portion of their
    subspecialty training.
        (iii) Clinical Research Mentored Scientist Development Award:
    Individual (K08).
        This award will support individuals who wish to engage in a period
    of closely supervised career development. It could be used in
    conjunction with the program award described above and also would
    permit candidates to engage in development of their capacity for
    clinical research at institutions that have not yet developed a mature
    institutional program.
        (iv) Academic Clinical Enhancement Award (K07).
        This award will provide ``protected'' time for fully trained young
    clinical researchers to focus a portion of their efforts on research
    and on the establishment of high-quality clinical research training
    programs at their institutions. Many young clinical faculty find that
    much of their time is spent seeing patients as a way of generating
    clinical income for their departments and institutions. Time remaining
    to develop and conduct research is limited and the time necessary to
    establish an academic program in the area of clinical research is even
    more limited. This award would permit young clinical faculty to devote
    25 percent or more of their efforts to organizing a patient-oriented
    research training program. Candidates will be clinicians who have
    demonstrated a capacity to conduct independent patient-oriented
    research.
        (c) NIAID is conducting a review of its research training programs
    in infectious diseases to ensure that they are producing investigators
    capable of carrying out independent research in clinical studies.
        (d) NCI will announce shortly a Career Transition Award. It will
    support outstanding, newly-trained basic or clinical investigators in
    the development of independent research skills through a two-phase
    program: an initial appointment in the NIH Intramural Research Program
    and a period of support at an extramural academic institution. If
    successfully, this program may provide a model for other Institutes and
    Centers to follow.
    7. Loan repayment for clinical researchers
        The NIH loan repayment program is currently limited to scientists
    in the Intramural Research Program. To broaden the eligibility for the
    loan repayment program to include clinical researchers at academic
    health centers throughout the country would require a legislative
    change.
    8. Examples of Other Clinical Research Initiatives
        (a) The NCI and the Department of Defense (DOD) have signed an
    agreement to allow DOD medical beneficiaries to participate in NCI-
    sponsored clinical trials at various centers, reimbursed through
    TRICARE/CHAMPUS, the DODs health program.
        (b) NCI plans to expand the Physician Data Query information system
    which allows physicians to have quick access to information about
    available cancer protocols at research institutions close to their
    medical practices.
        (c) In collaboration with the Health Care Financing Administration,
    the National Heart, Lung and Blood Institute (NHLBI) is sponsoring a
    randomized trial, the Lung Volume Reduction Clinical Trial, to
    determine the effectiveness, the benefits and the risks as well as the
    long-term outcomes of such surgery for patients with end-stage
    emphysema.
        (d) In fiscal year 1997, MAID will fund ten new clinical research
    initiatives and also will announce its intent to fund 12 additional
    initiatives in fiscal year 1998 for studies of AIDS, vaccine
    development and testing, chronic fatigue syndrome, immunological
    effects of aging, women's health issues, sexually-transmitted disease
    in adolescents, organ transplantation and emerging and re-emerging
    infectious diseases, including malaria. These initiatives range from
    small pilot studies to large phase II and III clinical trials.
    9. Partnerships in clinical research
        During 1996 and early this year, the Chair of the NIH Director's
    Clinical Research Panel, other members of the Panel and the NIH staff
    met with many of the partners who participate in clinical research,
    including representatives of the academic health centers, the
    pharmaceutical industry, managed care organizations, philanthropic
    foundations, biomedical associations, organizations such as the
    American Association of Medical Colleges and the American Medical
    Association, and members of Congress.
        (a) Academic Health Centers (AHCs). The initial recommendations of
    the CRP were widely circulated to the AHCs and comments are under
    review.
        (b) The pharmaceutical industry. The industry provides the largest
    support for clinical research in the U. S. It spends approximately $4
    billion each year. Meetings with representatives of nine large
    pharmaceutical companies have been held. Possible cooperation in areas
    of clinical research training and drug development was discussed.
        (c) Managed care organizations. Under the aegis of the American
    Association of Health Plans, the umbrella organization for 1,200
    managed care organizations (MCOs), meetings were held with seven MCOs
    that: have extensive research portfolios and have received NIH funding
    for some of their research projects. A high-level MCO official, who is
    also a clinical researcher, has been appointed on a part-time basis as
    an NIH Fellow in Managed Care. He serves as liaison to enhance
    communications between the NIH ICDs, the academic health centers and
    the MCOs. Other goals are to advance clinical research through greater
    involvement of the MCOs and their patients in peer-reviewed research
    studies and to explore models of MCO collaborations with NIH and the
    ABCs. An NIH-wide Managed Care Workgroup with representatives from each
    ICD has been convened to serve as a focus for discussing and
    coordinating collaborations with the managed care community.
        Dialog between NIH and its partners in clinical research continues
    with a goal of obtaining optimum national funding for clinical
    research, improving support mechanisms for and research training of
    young and mid-term clinical investigators and publicizing the benefits
    of U.S. clinical research. The NIH will maintain and increase its
    support for clinical research so that the health of the men, women, and
    children in this country and throughout the world is improved.

                           remarks of senator harkin

        Senator Specter. Senator Harkin.
        Senator Harkin. Thank you, Mr. Chairman. I apologize to you
    and to the distinguished Director of NIH, and all the Directors
    of the various Institutes, for being here late. We had a very
    important press conference that I had to participate in. So I
    apologize.
        I only really have one question that was spurred by an
    opening comment by someone that my staff told me about that I
    want to get to. But, again, I want to thank all of you,
    especially all of the Directors, for continuing to lead the
    Institutes under some adverse circumstances, in terms of
    funding, and for maintaining our preeminence in the world
    community, in terms of biomedical research.
        You have heard me say many times that NIH is really, I
    think, the jewel in the crown of all of the research we do in
    this country. And I have been working for several years, first,
    with Senator Hatfield and now with Senator Specter, to try to
    find a new source of revenue and funding for NIH. I still think
    that we are going to get it done, and I hope ratchet NIH up to
    a higher level than what it has been in the past. But I will
    not get into that now, other than to say thank you to all of
    you.
        And I am aware that in many circumstances, Directors have
    gone outside of their Institutes to speak to colleges and high
    schools and other entities like that to encourage young people
    to take up research. Dr. Varmus, I hope that you and all the
    other Directors will keep that up. And I hope that you will
    promote that even more. So if you need more money in your
    travel allowance for that, let me know. [Laughter.]
        We need to get out and get these young people stimulated to
    take up research. There is just so much happening in medical
    research now. And I think if we can provide the funding in the
    future and get you people out to stimulate these young people,
    I think we will draw some of them into research. So keep up
    that good work, too.
        Two things. First, new drug discoveries. I will not ask a
    question about that now. I will submit it in writing.
    Especially, Dr. Klausner, I want to talk to you about that.
    What are we doing in terms of new drug discoveries, and what is
    the structure and how are we proceeding? Is it good? Is it bad?
    Do you think what we are doing is sufficient?

                         cloning research restrictions

        The second question I had was--and I know that Senator
    Specter is anxious to get on to the next panel--you know from a
    previous meeting we had of my interest in cloning and why I
    think it holds great promise for us in the future. I would not
    want to see us, in any way, try to restrict legitimate
    scientific research and inquiry. And I do not believe we can. I
    believe this investigation is going to go forward.
        Now, to have parameters on, as I have said before, how we
    conduct scientific research and what ends it is being used for,
    I think are legitimate discussions for public policy. But to
    try to put a noose around something and to end something, and
    say no, you cannot even go down that pathway, I think is wrong.
    And so I think there is a lot of promise in cloning. And I do
    not mean clone a person. That is not what I am talking about. I
    am talking about cloning cells and I am talking about cloning
    DNA. I am talking about the different things that we can use
    that can play a major role in quality of life and saving lives
    and curing a lot of illnesses.
        I am curious, Dr. Varmus, as to whether or not you feel
    that the President's directives are not restrictive enough--as
    I understand the question or the statement that was put earlier
    when this panel met about an hour ago that one of my colleagues
    said that they did not think the President's proposal or the
    proposal coming out of this Commission was restrictive enough.
    I just wondered if you wanted to comment on that.
        Dr. Varmus. Thank you, Senator Harkin, for the opportunity.
        Senator Bond made a couple of comments about the
    President's proposal that I think require some correction.
    First, the Senator objected to the sunset clause that is in the
    proposed Presidential bill, on the grounds that ethics would
    not change. Well, I think there are a couple of reasons to
    argue for reevaluation of the ban that he is asking for.
        One, of course, relates to the point you just made--namely,
    that it would be important, some years after the bill was
    passed, to be sure that the bill had not infringed upon our
    ability to conduct science that we all believe is ethical. You
    have named a number of areas of research that might be excluded
    by a bill that was not properly framed.
        We believe that the bill the President has sent to the
    Congress places appropriate walls of demarcation between what
    is being forbidden by the bill and the science that you and Dr.
    Collins have described--the cloning of cells, the cloning of
    DNA, the cloning of animals--that we believe is appropriate to
    pursue. And we would want to reevaluate a bill some years later
    to be sure that it was not excluding valuable and ethical
    research.
        The second point I would make about Senator Bond's comments
    is that he argued that the bill would apply only to federally
    funded research. That is not the case. The bill would apply to
    all efforts to use nuclear transfer to create a human being,
    regardless of how the cloning was supported.
        Senator Harkin. Thank you for clarifying that, Dr. Varmus.
        Again, thank you, Mr. Chairman. Thank you again.
        And thank all of you Directors for the great leadership you
    have provided in our country. My hat is off to all of you.
    Thank you.
        Senator Specter. I join my colleague, Senator Harkin, in
    complimenting you on the work you have done. We want to be
    supportive. When you submit the supplementals, do it in a way
    which will be as helpful as possible to the objectives which we
    are looking for. You have great Institutes. We are very proud
    of the work you have done. We are very pleased. We want to
    support you to the fullest extent we can.
        We will now turn to panel 2, to discuss the new age
    medications and their implications. Recently drugs called
    protease inhibitors have been found to be remarkably effective
    in suppressing the replication of the AIDS virus in infected
    individuals. This has meant literally a new lease on life for
    many people with AIDS.
        This hearing is still in process. If you would exit
    quietly, we would appreciate it, so we can move on to panel 2.
    There have been four such drugs approved by the FDA out on the
    market. And we can anticipate additional anti-AIDS mechanisms.

                                    Panel 2

    STATEMENT OF ANTHONY S. FAUCI, M.D., DIRECTOR, NATIONAL
                INSTITUTE OF ALLERGY AND INFECTIOUS
                DISEASES
    ACCOMPANIED BY:
            CLAUDE EARL FOX III, M.D., M.P.H., ACTING ADMINISTRATOR, HEALTH
                RESOURCES AND SERVICES ADMINISTRATION
            F.E. THOMPSON, JR., M.D., M.P.H., STATE HEALTH OFFICER,
                MISSISSIPPI STATE DEPARTMENT OF HEALTH
            DANYSE LEON, ON BEHALF OF THE CIRCLE OF CARE AND AIDS POLICY
                CENTER, PHILADELPHIA, PA
            KIM WILLIAMS, ON BEHALF OF THE SOUTH MISSISSIPPI AIDS TASK
                FORCE, BILOXI, MS

                   summary statement of dr. anthony s. fauci

        Senator Specter. We would now like to turn to our second
    panel. Our first witness is Dr. Anthony Fauci, Director of the
    National Institute of Allergy and Infectious Diseases. He began
    his career at NIH as a clinical associate at the Laboratory of
    Clinical Investigation. He is a graduate of Cornell Medical
    College. He made significant contributions to research on
    immune medicative diseases, including the understanding of how
    the AIDS virus destroys the body's defenses, leading to its
    susceptibility to deadly infections.
        We are just a little late as we are proceeding, so we would
    ask our witnesses to stay within the 4-minute time rule, which
    we will establish on our clock, please.
        Dr. Fauci, the floor is yours.
        Dr. Fauci. Thank you very much, Mr. Chairman. It is a
    pleasure to be here with you today.
        What I would like to do is briefly outline for you the
    basis and the process for the development of recommendations
    for the treatment of HIV-infected individuals. This slide here
    shows something that has been known for some time; namely, when
    HIV-infected individuals get infected, there is a burst of
    virus, as shown in the red triangles, which gets suppressed
    somewhat after a few weeks. But what was not known years ago is
    that the virus continues to replicate throughout the course of
    disease, even in people who are clinically latent and feel
    quite well.
        This has now become critical to the philosophy behind the
    treatment of HIV-infected individuals because, as opposed to
    following the level of the CD-4 count, which is not necessarily
    a good prognostication of where the disease is going--it only
    tells you what the state of immunosuppression is now--the virus
    has become much more important because of its rapid turnover.
        In fact, if you look at studies that have been done, it is
    very clear now that if you look at individuals who have high
    levels of virus, their course is much more aggressive and
    fulminant than those individuals who have a lower level of
    virus. So the philosophical basis of treating individuals based
    on the level and turnover of virus has been something that has
    now evolved over the past few years.
        Historically, back in 1987, when we only had one drug, AZT,
    we were able to accomplish a bit of that by decreasing the
    virus, but that was for a very limited period of time. It would
    generally bounce back, usually in a resistant form. In 1994,
    with the two-drug combinations, we had a better effect on
    decreasing the virus, and it lasted a bit longer. But the long-
    term clinical benefit, and certainly the ability to suppress
    virus to completely below detectable level, was not successful.
    So what had been standard therapy in 1987 and 1994 is now
    generally considered suboptimum therapy.
        In contrast, in 1996-97, with the triple combination,
    including the protease inhibitors, the level of virus could
    decrease now in most cases to below detectable level for a
    considerable period of time. We know now that in the short
    range, this is associated with a clinical benefit. What we do
    not know is what the long-range effect would be, balancing
    toxicity and other effects on lifestyle of an individual,
    compared to the potential beneficial effects of having this
    rather substantial decrease in virus.
        So now we have a wealth of studies and a wealth of
    information. These are things I do not want to necessarily go
    through; they just emphasize the point that there are a large
    number of trials, most of which have shown virological
    beneficial effect, a few of which have shown short-term
    clinical effect.
        What this has led to is an understandable confusion on the
    part of both patients and physicians on just how to use these
    drugs, including the protease inhibitors. Based on that and
    based on the need to have some guidance, flexible guidance,
    Secretary Shalala asked Eric Goosby of the Office of AIDS and
    HIV Policy at the Department, together with Mark Smith, who was
    then vice president of the Henry J. Kaiser Family Foundation,
    to put together a panel of experts, which was chaired by myself
    and Dr. Bartlett from Hopkins, including private and public
    sector individuals, patient advocates, patients themselves,
    insurers, and individuals interested in AIDS policy. Over a
    period of several months, they have evolved, based on
    principles that had been laid down by an NIH panel, to come up
    now with recommendations which will be available for public
    comment sometime next week for a 30-day period of commenting.
        The fundamental basis of the recommendations is to be
    aggressive in suppressing the virus to as low as possible for
    as long as possible. Once the decision is made, then a whole
    series of recommendations about how to start, what to start
    with, when to change, what to change to, all of these will be
    asked for public comment, as I mentioned, beginning next week.

                               prepared statement

        Then, finally, let me close--I was asked by the staff to
    just spend one-half minute on something that is equally as
    important as therapy, and that is prevention because, despite
    the substantial advances in HIV therapeutics, a comprehensive
    approach to the HIV epidemic will have to include the
    development of a safe and effective vaccine, which you alluded
    to in the previous panel. As I can just summarize in a moment,
    we have had an acceleration of our effort, with a 33-percent
    increase in vaccine resources from 1996 to 1998, as well as a
    number of other efforts, which I would be happy to discuss
    during the question period.
        Thank you, Mr. Chairman.
        [The statement follows:]

                  Prepared Statement of Anthony S. Fauci, M.D.

        The impact of the AIDS pandemic is staggering. Worldwide,
    more than 29 million people have been infected with the human
    immunodeficiency virus (HIV), the cause of the acquired
    immunodeficiency syndrome (AIDS). An additional 8,500 people
    become infected with the virus each day. Globally, at least 8.4
    million individuals with HIV/AIDS have died, including more
    than 360,000 people in the United States.
        Despite the mounting toll of HIV in this country and
    abroad, recent advances in HIV research have provided a degree
    of optimism for HIV-infected people and for those of us working
    to understand and control this devastating disease. In
    particular, progress in understanding the fundamental
    mechanisms of the HIV disease process, and advances in AIDS
    clinical research have allowed us to formulate new strategies
    for treating HIV-infected people.
        The rapidity of advances in AIDS pathogenesis and
    therapeutics as well as the recent availability of a large
    number of drugs for the treatment of HIV-infected individuals
    have led to uncertainty among many patients and their
    physicians regarding the optimal approach to the treatment of
    HIV infection. In particular, questions arise regarding when to
    initiate therapy, which drugs to use, how to monitor the
    effects of therapy, when to change drugs, and which drugs to
    change to. Since there are few, if any, clinical trials with
    long-term clinical endpoint results that have come to fruition,
    there is a need for a coherent set of flexible treatment
    guidelines upon which patients and their physicians can rely as
    they engage in the complex task of the treatment of HIV
    infection.
        In this regard, two expert panels convened in 1996 by the
    National Institutes of Health (``Principles'' panel) and the
    Department of Health and Human Services (DHHS) and the Henry J.
    Kaiser Foundation (``Guidelines'' panel) have synthesized the
    recent advances and articulated principles of therapy and
    specific treatment recommendations for HIV-infected adults and
    adolescents. Two complementary draft documents, the Report of
    the NIH Panel to Define Principles of Therapy of HIV Infection
    and the DHHS Guidelines for the Use of Antiretroviral Agents in
    HIV-Infected Adults and Adolescents, will soon be made
    available for public comment. Following consideration of
    comments and revision, the documents will be published in the
    Morbidity and Mortality Weekly Report of the Centers for
    Disease Control and Prevention and subsequently in a peer-
    reviewed medical journal.
        As discussed in the draft documents, we have learned in
    recent years that HIV actively replicates throughout the course
    of HIV disease, even when a patient may feel perfectly well.
    The level of HIV replication is striking: billions of HIV
    particles may be produced and cleared from an individual's body
    each day. Epidemiologic cohort studies have demonstrated that
    the level of HIV in an individual's plasma soon after infection
    is highly predictive of the rate of progression of HIV disease
    in that person; that is, patients with high levels of virus are
    much more likely to get sicker, faster, than those with low
    levels of virus. Certain short-term clinical trials have shown
    that reducing the levels of HIV in plasma is directly
    associated with a clinical benefit.
        Potent drug combinations, notably three-drug combinations
    that include a protease inhibitor in combination with two other
    antiretroviral drugs, such as those in the AZT class of
    compounds, are now being used to control the replication of HIV
    in many patients to a degree and for a duration not previously
    possible with one-or two-drug antiretroviral regimens. Several
    studies of triple-drug antiretroviral therapy have demonstrated
    both virologic and clinical benefits to patients.
        As delineated in the draft DHHS Guidelines for the Use of
    Antiretroviral Agents in HIV-Infected Adults and Adolescents,
    these and other findings have provided the rationale for
    aggressive antiretroviral therapy for HIV-infected people, as
    well as for routinely using newly available blood tests to
    measure a patient's viral load when initiating, monitoring and
    modifying anti-HIV therapy. Today, the central tenet of
    antiretroviral therapy is to reduce the amount of HIV in a
    person's body to the lowest possible level for as long as
    possible, with the goal of forestalling disease progression.
        The new draft documents reflect the current state of
    knowledge regarding the HIV disease process and the use of
    antiretroviral drugs, and will be updated periodically to
    reflect changes in the rapidly evolving field of AIDS research.
    The draft treatment guidelines are not intended to substitute
    for the judgment of a physician expert in the care of HIV-
    infected individuals. Indeed, they should be used in the
    context of an ongoing dialogue between patient and clinician,
    including discussion of the many uncertainties in HIV therapy.
    In this regard, although we are hopeful, we do not yet know for
    certain whether early treatment of asymptomatic, HIV-infected
    individuals will have long-term clinical benefits, or if
    cumulative toxicity and the development of drug resistance will
    ultimately outweigh the benefits of aggressive therapy for some
    patients.
        Finally, despite important advances in HIV therapeutics it
    is still critical to pursue vigorously the development of a
    safe and effective HIV vaccine. At the National Institutes of
    Health, we have formulated a balanced strategy to HIV vaccine
    development. Basic research is helping to answer important
    questions about HIV and the immune responses that might protect
    an individual from HIV infection or prevent the progression of
    disease. At the same time, clinical researchers are testing
    candidate vaccine products in small-scale trials. Early studies
    of single product regimens have given way to more complex
    strategies, including priming the immune system with a
    recombinant vector vaccine expressing HIV proteins and then
    boosting the immune response with a purified HIV recombinant
    protein. A Phase II trial employing this approach recently
    opened to patient accrual and will enroll 420 volunteers in 13
    U.S. cities.
        The newly established NIH AIDS Vaccine Research Committee,
    headed by Dr. David Baltimore, plays a central role in advising
    the NIH on key scientific questions in HIV vaccine development.
    In addition, the NIH has begun development of a Vaccine
    Research Center within the NIH intramural research program to
    stimulate multidisciplinary research into basic and clinical
    immunology and virology, and ultimately vaccine design and
    production. NIH is also preparing for eventual large-scale
    efficacy trials of HIV vaccines by establishing community
    linkages and conducting the epidemiologic, virologic and
    behavioral research required to ensure the success of such
    trials.
        Recent progress in HIV therapy has been extraordinary, and
    I am confident that development of an HIV vaccine that is safe
    and effective will be accomplished. In conclusion, in order to
    control the HIV pandemic in this country and abroad, an AIDS
    vaccine and effective antiretroviral drugs are essential.

                       summary statement of dr. earl fox

        Senator Specter. Thank you very much, Dr. Fauci. We will
    come to some more development during the questions and answers.
        I turn now to Dr. Earl Fox, Acting Administrator of the
    Health Resources and Services Administration. Before joining
    HRSA, Dr. Fox was Health and Human Services Regional
    Administrator for region 3 in Philadelphia, and subsequently,
    the Department's Deputy Assistant for Disease Prevention and
    Health Promotion. He is a graduate of the University of
    Mississippi School of Medicine. He comes with accolades in all
    directions--Mississippi, Pennsylvania.
        Dr. Fox, we welcome you here and look forward to your
    testimony.
        Dr. Fox. Thank you, Mr. Chairman. You have my statement.
        As you know, HRSA administers all four titles of Ryan
    White, and first we want to thank this Congress and the
    administration for the titles I, II, III, and IV funding. As
    you know, there has been over a 200-percent increase over the
    last couple of years. We now have over $1 billion in this
    program, and $380-some-odd, $368 million, that total amount
    that is spent in Ryan White, of which 167 is for ADAP.
        We know that the combination therapy that is evolving is
    going to cost somewhere in the neighborhood of $10,000 to
    $13,000 a year, and that the support for these drugs actually
    has come from a variety of different programs. It has come from
    the Ryan White ADAP program that is administered by the State
    as well as from State medicaid programs. There are some 31
    States also that are voluntarily appropriating money from ADAP.
        One of the problems in trying to look at the numbers is to
    put together all the figures to determine actually what is out
    there and what needs to be out there. We have been trying to
    piece together public and private data from CDC, from HCFA,
    from our own data, as well as the Office of the Secretary.
        CDC estimates that there are probably--the midrange of the
    number they estimate is probably some 775,000 individuals that
    are living with HIV in this country. Probably 500,000 of those
    actually know their HIV status.
        Current estimates would support the figure of about 200,000
    that are currently paid for either from Medicaid or from ADAP.
    About 40,000 at any one time from ADAP and about 160,000 a year
    on Medicaid. The remainder, some 300,000, actually we do not
    know how much private insurance covers, and there is a lot of
    difficulty with getting this number.
        We do know that with combination therapy there would be
    earlier intervention, and therapy with a large number of drugs.
    In addition to not knowing exactly how many people we will need
    to support, we also know that there is some difficulty in
    getting numbers from our existing programs. For instance, the
    eligibility criteria on the ADAP programs in all the States
    varies, and those are determined by the State. There is not a
    national criteria that is determined by the program.
        The funding levels, the prescription restrictions, the
    number of prescriptions that are provided, the actual formulary
    for the ADAP programs are determined by State, and in fact one
    of the problems with trying to just add the numbers up is that
    States may not even keep a waiting list beyond those numbers of
    individuals that they know they have funding for, so because of
    restrictions at the State level around deficit spending, we
    feel like the waiting list is probably not a good reflection.
        But it is clear that significant demand exists, and we know
    that this, again, will continue.
        Just briefly to tell you, because it does impact on the
    availability of drugs, what HRSA has done around trying to get
    the best buy for the dollar, which I know is of interest to
    Congress and this committee, we have had some technical
    assistance, contacts with the ADAP's, and we feel like over
    time that has resulted in some cost savings.
        There actually is a section of the Veterans Health Care Act
    that provides for some lowering of the drug pricing around the
    same kinds of discounts that Medicaid gets, and we know that
    the number of States that have taken advantage of that has
    increased by over 50 percent.
        There is a voluntary manufacturer rebate. States are
    receiving discounts. There are probably 40 States that have
    some mechanism, and it varies all over the waterfront, for some
    type of price reduction in the AIDS drugs.
        In addition to that, we have just recently submitted a
    Federal Register notice to make available a national rebate. I
    was talking about this earlier with Senator Cochran about a
    national rebate that would be available to all State and ADAP
    programs that would hopefully further drive down the cost for
    these AIDS drugs.
        So we are looking at trying to make every economy we can
    there.
        Finally, in addition to that, we only have probably one-
    half of the States that participate in what is called the 3-40
    mechanism, or a program that we have for discounts from
    manufacturers, and we plan to submit a proposal to the Federal
    Register to actually require participation of all States either
    through the direct discount or through the rebate mechanism so
    that we again get the best buy for the dollars.
        And just in the closing comments let me say that the whole
    problem around drug funding we think is not just an ADAP
    problem. It is in part an ADAP problem. It is a problem with
    trying to get States to provide some funding. We know that 10
    States contribute the bulk of State moneys, and there are some
    20 States that do not put any State dollars in.
        It is an issue of trying to look at Medicaid. There is a
    great variety of room for what Medicaid can fund, and in the
    States that have broader Medicaid programs Medicaid pays for
    every fourth patient that ADAP pays for one, so it is a problem
    with that.
        We want to continue to try and encourage the drug
    companies, and as the Government buys more drugs we think the
    drug companies should increase the amount that they provide in
    free drugs, because we are obviously buying more drugs and
    hopefully adding to their bottom line as well, so we think they
    should provide more.

                               prepared statement

        So we think that it is a joint problem, that ADAP alone is
    not the solution, and I have some other comments I would be
    glad to make later about some other ideas we have about ways
    this problem could be addressed, but the bottom line is, we
    appreciate the support of both the administration and this
    Congress and ADAP in addressing this problem.
        Thank you.
        Senator Specter. Thank you, Dr. Fox.
        [The statement follows:]
                 Prepared Statement of Dr. Claude Earl Fox, III
        Mr. Chairman, I am Dr. Claude Earl Fox, Acting Administrator of the
    Health Resources and Services Administration (HRSA). HRSA is the Agency
    that administers the safety net programs providing health care services
    to the uninsured and vulnerable individuals of our nation. These
    programs include Community Health Centers, the Maternal and Child
    Health Program, and the Ryan White Program.
        I appreciate the opportunity to discuss the recent developments
    involving HIV/AIDS pharmaceuticals and the related health care policy
    and financing issues, because these will be critical for both the
    public and the private sectors.
    Administration's record on Ryan White and ADAP
        The Clinton Administration has worked diligently with both parties
    in Congress to increase funding for grants authorized by the Ryan White
    CARE Act. The Ryan White program has grown from $386 million in fiscal
    year 1993 to $1.036 billion in the fiscal year 1998 Budget, a 168
    percent increase since the Administration took office.
        In particular, the Administration has sought major funding
    increases for AIDS Drug Assistance Programs authorized under Title II
    of Ryan White. Since the FDA began approving protease inhibitors in the
    Winter of 1996, the Administration has proposed and supported specific
    funding increases for Title II ADAP activities. In March of 1996, the
    President proposed and the Congress enacted a $52 million set-aside in
    fiscal year 1996 for ADAP programs. Just five months later, he proposed
    another Budget Amendment for fiscal year 1997 to increase this earmark
    by $65 million to a total of $117 million. However, the Congress
    appropriated $167 million for the ADAP set-aside in fiscal year 1997,
    $50 million above the President's request.
        While we are proud of our record, we are also pleased with the
    efforts of our partners--States and local governments--who have
    contributed significantly to ADAPs and other AIDS treatment programs in
    expanding access to pharmaceuticals. Total funding for State ADAP
    programs in fiscal year 1997 is an estimated $368 million, $167 million
    of which (or about 45 percent of total ADAP funding) derives from the
    aforementioned ADAP earmark. So while the Federal government is a major
    contributor to State ADAP budgets, we will continue to look to our
    partners at the State and local level to play a major role in
    addressing this situation as well.
    Background
        The rapidly evolving standard of care for HIV, which holds great
    promise to extend the length and quality of the lives of people with
    HIV, comes with a high price tag. The more conservative estimates are
    that combination anti-retroviral therapy, including the newly approved
    protease inhibitors, costs at least $10-12,000 a year per patient. The
    principal Federal programs supporting access to combination HIV therapy
    for the poor are Medicaid and the Ryan White CARE Act's AIDS Drug
    Assistance Program (ADAP). Both programs are administered by the States
    based on Federal guidelines that allow for significant variation in
    financial eligibility criteria and benefits. State contributions, which
    are required by Medicaid and are voluntarily appropriated for ADAP by
    31 States, allow Federal expenditures to provide significantly more
    drug therapies for people living with HIV.
    The possible demand for combination therapy
        Limitations in available public and private data make it impossible
    to calculate the possible demand for these drugs with any precision.
    The Centers for Disease Control (CDC), the Health Care Financing
    Administration (HCFA), and the Health Resources and Services
    Administration (HRSA), as well as the Office of the Secretary have
    worked together to establish a reasonable estimate of the level of
    potential demand facing these Federal/State programs, and the private
    health care sector. Approximately 775,000 individuals in the United
    States are living with HIV disease (using the midpoint of the estimate
    of 650,000-900,000). The CDC estimates that about two-thirds (500,000)
    of those people know their HIV status. In the short term, therefore,
    while efforts are underway to encourage all at potential risk to learn
    their HIV status, the immediate demand for public and private primary
    care and drugs will probably be limited to those 500,000 people.
        Some (albeit unknown) proportion of these individuals will likely
    be covered by private insurance; others are likely to be low-income and
    meet other categorical criteria for Medicaid coverage or other public
    programs. Medicaid and ADAP provide drugs for approximately 200,000
    people. According to HCFA actuaries, Medicaid may be providing services
    to approximately 160,000 eligible people living with AIDS and HIV; ADAP
    currently serves approximately 40,000 people at any one time, and over
    80,000 cumulatively during the year. These 200,000 people constitute 40
    percent of the 500,000 estimated by CDC to have HIV and know their
    status.
        Not all people with HIV disease will use combination therapy, but
    the forthcoming release of treatment information which will recommend
    earlier intervention with combination therapy may motivate more people
    with HIV to learn their status, enter primary care, and seek clinically
    appropriate access to pharmaceutical treatment.
        In addition, it is not known how many more individuals will
    financially need public support to access combination therapy. The
    variation in eligibility criteria, funding levels, and prescription
    restrictions for State Medicaid and ADAP programs, as well as variation
    in formularies among ADAP programs, make it hard to determine the
    potential demand for these drugs. Some State ADAPS report limited
    formularies, waiting lists, and more restricted access to specific
    drugs on formularies because of increased demand on these programs.
    Combined with the overall costs listed above, it is clear that
    significant demand exists, for both prescription drugs and underlying
    primary care services necessary to deliver the treatment.
    Promoting maximum effectiveness of ADAP
        While CARE Act AIDS Drug Assistance Programs can only be part of
    the response to this situation HRSA has taken multiple steps to assure
    that Federal funds appropriated for ADAPs achieve maximum results. For
    example, regular technical assistance conference calls for all ADAPs
    were initiated in September of 1996 and four of the first seven calls
    focused on cost containment approaches. The cumulative impact of these
    activities is summarized below:
        Participation in the Section 602 Veterans Health Care Act Program
    (``ODP Pricing'') increased 53 percent from July 1996 to May 1997 (from
    15 to 23 States).
        The number of States securing voluntary manufacturers' rebates
    increased from 27 to 36 during the same time period, a 33-percent
    increase.
        The number of States receiving discounts from pharmacies or
    manufacturers also increased substantially, and the number of States
    using multiple cost containment strategies increased over 100 percent--
    from 20 to 41.
        HRSA has developed a Federal Register Notice to establish a rebate
    component within the Section 602 Program which would make the program
    accessible to virtually all ADAPs.
        HRSA continues to develop its capacity and refine its approaches to
    assisting States in managing their ADAP programs with maximum
    efficiency. Recent innovations have included joint ADAP and ODP site
    visits to facilitate participation in the Section 602 Program,
    convening a group of key State representatives to define a workable
    model for forecasting program utilization and costs, and proactive
    enrollment of all State ADAPs in the Section 602 program to provide
    non-participating States with maximum flexibility for participating in
    ODP in the near future.
        Despite the progress made through these efforts, HRSA believes
    there are still greater economies to be achieved in ADAP programs.
    Policy responses
        In addition to the establishment of the rebate option in the
    Section 602 Program, HRSA intends to require all States to utilize the
    340b mechanism to achieve reliable and consistent levels of cost-
    savings on all medications on their ADAP formularies. This is expected
    to reduce not only the cost of drugs purchased by ADAPs, but the level
    of burden on States associated with individually negotiating discounts
    with multiple manufacturers. We will publish a notice of our intent in
    the Federal Register to obtain comment before making this a condition
    of our Ryan White Grants.
        Encourage States to Contribute Additional Funds to ADAP.--ADAP set-
    aside funds currently do not require matching funds from States.
    Currently, 10 States contribute the bulk, approximately 90 percent of
    the State contributions, (examples are: California, Illinois,
    Louisiana, Massachusetts, New York, Ohio, Pennsylvania, Puerto Rico,
    Texas, Washington.) About 20 States (Alabama, Mississippi, Arkansas,
    Arizona, Florida, Kansas, Michigan, and Minnesota for example) do not
    contribute any funding at all. These States should be encouraged to
    contribute to ADAP.
        Encourage ADAPs to Target Resources to Low-Income Individuals.--HHS
    has been encouraging States to target low-income individuals in
    guidance that says standards should be anchored to federal poverty
    guidelines. Twenty-two states have focused their eligibility on low
    income. All States are encouraged to review their financial eligibility
    criteria and assure that they focus on providing coverage for low-
    income people with HIV.
        While the potential demand for these medications is significant, we
    look forward to working with Congress, as well as our partners at the
    State and local government to address this situation.
        It should be noted, however, that the ability of HRSA to respond to
    State-specific crises through ADAP is constrained. The formula by which
    any ADAP appropriation must be allocated among the States is
    established in the CARE Act. This formula, and therefore the Agency,
    cannot respond to specific disproportionate State-level difficulties
    that are very often compounded by factors such as State-defined
    limitations in Medicaid programs (in terms of both eligibility and
    benefits) and lack of State participation in the cost of ADAPs.
    Conclusion
        ADAP alone is not the solution to the AIDS drug issue. The solution
    must be a system-wide approach, combining private, state, and Federal
    resources. No single Federal or State program can provide a total
    solution. With the private sector, it is critical that State and
    Federal programs work together to maximize resources. Medicaid and the
    Ryan White program must be examined in light of this new hope offered
    by drug therapy.
        The pressures on policy makers, clinicians, and service providers
    to expand access to care have been challenging for a decade-and-a-half.
    They have not ever lessened, but in the last 18 months their source has
    changed profoundly.
        Up until very recently, the pressures we all felt were tragically
    linked to whether or not we had the will and the resources to assure
    that the most vulnerable members of our society who were infected with
    HIV or had AIDS would have a reasonable quality of life and would die
    with some level of dignity.
        The question now appears to be how many people who could live
    longer and healthier will have access to the necessary treatments to
    achieve that potential.
        I appreciate the opportunity to discuss these critical issues
    today.

                      summary statement of dr. ed thompson

        Senator Specter. Now we will turn to Dr. Ed Thompson, State
    Health Officer with the State of Mississippi since 1993. Prior
    to that, he directed the Mississippi State Department of Health
    Disease Prevention, a graduate of the University of Mississippi
    School of Medicine, master's degree in public health from Johns
    Hopkins University.
        Welcome, Dr. Thompson, and the floor is yours.
        Dr. Thompson. Thank you, Mr. Chairman. I certainly agree
    with Dr. Fox that ADAP is not the complete answer. The answer
    has many parts. ADAP is, however, a major part of that answer,
    and it is primarily to address ADAP that I am here. However, my
    remarks go beyond just the ADAP and talk more also about a
    greater need than that.
        Mississippi is a relatively average State with regard to
    AIDS cases. In 1996 we were 28th among States for AIDS cases
    and 22d in AIDS case rates.
        We are 1 of only 26 States that require reporting of all
    HIV cases; 512 new HIV infections were reported in 1996. If our
    first quarter this year trend holds, just over 600 new cases
    will be reported in 1997.
        HIV is now one of the five leading causes of years of
    potential life lost in Mississippi, behind unintentional
    injuries, heart disease, cancer, and homicide.
        As with the rest of the country, AIDS is no longer a
    disease of gay men and IV drug users in Mississippi. In 1996,
    less than one-half our new AIDS cases fell into these
    categories. An estimated three-fourths of our new HIV cases
    were in heterosexuals.
        Like many other States, Mississippi relies heavily on Ryan
    White Care Act funding to help cover the treatment needs of
    persons with AIDS. Although we devote State funds to AIDS
    prevention, we, like 22 other States, have, heretofore, not
    spent State funds for drug treatment through the AIDS Drug
    Assistance Program, or ADAP.
        Under the new guidelines about to be published for the use
    of protease inhibitor antiretroviral combination therapy--Dr.
    Fauci referred to these earlier--they cost 10 times more than
    all other therapies, and these funds will no longer even begin
    to cover the real needs.
        Unlike many other States, because we have HIV reporting,
    Mississippi is able to have a real idea of what that need might
    be. There are at least 4,500 known persons in Mississippi with
    HIV or AIDS. The new protease inhibitor antiretroviral
    combination therapies are being recommended for many more HIV-
    infected persons than before.
        At $12,000 to $18,000 a year for the three-drug regimen
    alone, the cost to treat just one-half of our cases could range
    from $25 to $40 million for 1 year. With 500 new HIV cases each
    year, the cost would continue to escalate.
        Even to provide combination therapy to all the roughly 880
    patients currently enrolled in the ADAP in Mississippi--and I
    call your attention to an error in my written testimony. It
    says, receiving assistance through. It should be, enrolled in--
    will require $10 million.
        Beginning April 1, our Ryan White funds increased to $2
    million, leaving a potential unmet need of $8 million. Other
    States face similar situations. The average State contribution
    to the ADAP is 24 percent of total ADAP funding. The potential
    need for it outstrips the available State dollars.
        Even if States radically increase their contributions, even
    now, in order to keep those patients already receiving protease
    inhibitor antiretroviral combination therapy from the ADAP in
    our State, around 200, on the combination we are having to
    remove from the program those patients who have Medicaid, and
    limit the number of drugs, other than those required for the
    combination therapy, for the remaining patients. Without
    substantial new funding, more patients will have to be cut from
    the program in 1998.
        All States will have to consider contributing State funds
    for drug treatment of persons with HIV and AIDS, or sharply
    increasing their current contribution. We have recommended our
    State's legislature conduct hearings into AIDS treatment
    funding before and during the upcoming State budget development
    process, and I am confident they will do so. I anticipate that
    some State funding for AIDS drugs will be seriously considered
    in the next session, but it is not likely the State will be
    able to afford the multimillion dollar cost of treating the
    thousands of persons needing the new treatment.
        Without increased Federal funding for the Ryan White
    Program, it may not be possible even to meet the needs of those
    already on the ADAP in many States. To meet the needs of the
    far greater number not now being treated presents a national
    challenge of immense proportions.
        In closing, I would offer four recommendations to this
    committee and to the Congress. First, as you consider treatment
    and research needs for AIDS, maintain a focus on and funding
    for prevention. If we do not, the need for treatment will
    become impossible to meet.
        Second, at least some increase in Ryan White funds for AIDS
    drugs is needed now, in fiscal year 1997, and additional
    increases, likely substantial, should be considered in the
    future.
        Third, in considering potential State contributions to AIDS
    drug funding, take into account the competing needs for States
    to address other serious health problems, including heart
    disease, stroke, cancer, and injuries.

                               prepared statement

        Fourth and finally, as part of any consideration of Ryan
    White funding, address the issue of more equitable distribution
    of funding among States with and without Ryan White title I
    metropolitan areas. The current system penalizes more rural
    States without large cities heavily infected by AIDS.
        Senator Specter. Thank you very much, Dr. Thompson.
        [The statement follows:]

                  Prepared Statement of Dr. F.E. Thompson, Jr.

        I am Dr. Ed Thompson, State Health Officer of Mississippi.
    As in most States, our State Health Department is primarily
    responsible for the prevention and control of disease and
    protecting the public's health through population and community
    based prevention. Direct provision of medical care has been
    largely limited to maternal and child health or to medically
    controllable diseases such as tuberculosis. The rapid increase
    in the number of persons with HIV and AIDS has faced us with
    issues regarding treatment of disease that are outside that
    usual focus and beyond the ability of many states to handle.
        Mississippi is a relatively ``average'' state with regard
    to AIDS cases. In 1996 we were 28th among states for AIDS
    cases, with 450 reported to CDC, and 22nd in AIDS case rates,
    with 16.6 cases per 100,000 population.
        For HIV without AIDS, we are above average, but not with
    regard to numbers. Mississippi is one of only 26 states that
    require reporting of all HIV cases. We began in 1988, in order
    to do contact follow up on all cases. 512 new HIV Infections
    were reported in 1996. If our first quarter trend holds, just
    over 600 new cases will be seen in 1997.
        HIV is now one of the 5 leading causes of years of
    potential life lost in Mississippi, behind unintentional
    injuries, heart disease, cancer, and homicide.

    Years of potential life lost--leading causes

                                Mississippi--1993

    Unintentional injuries............................................ 1,631
    Heart disease..................................................... 1,048
    Cancers...........................................................   911
    Homicide..........................................................   575
    HIV...............................................................   300

        As in the rest of the country AIDS is no longer a disease
    of gay men and IV drug users. In 1996 less than half our new
    AIDS cases fell into these categories. An estimated three-
    fourths of our new HIV cases are in heterosexuals.
        As in the rest of the country, minorities are over-
    represented among our cases. In 1996 73 percent of our new AIDS
    cases and 77 percent of new HIV cases were in African Americans
        Like many other states, Mississippi relies heavily on Ryan
    White Care Act funding to help cover the treatment needs of
    persons with AIDS. Although we devote state funds to AIDS
    prevention, we, like 22 other states, have heretofore not spent
    state funds for drug treatment through the AIDS drug Assistance
    Program, or ADAP. With the increasing successful use of
    protease inhibitor/anti-retroviral combination therapy, costing
    ten times more than older therapies, these funds will no longer
    even begin to cover the real need. Under the new guidelines
    about to be published, in order to keep those patients already
    receiving protease inhibitor combination therapy from the ADAP
    in our state, we will have to Move from the program those
    patients who have Medicaid and limit the number of drugs other
    than those required for the combination therapy for the
    remaining patients.
        Unlike many other states, because we have HIV reporting,
    Mississippi is able to have a real idea what that need might
    be. There are at least 4,500 known persons in Mississippi with
    HIV or AIDS. The new protease inhibitor/anti-retroviral
    combination therapies are being recommended for many more HIV
    infected persons than before. At $12,000 to $18,000 a year for
    the three-drug regimen alone, not any other needed medications,
    the cost to treat just half of them could range from 25 to 40
    million dollars for one year. With 500 new HIV cases each year,
    the cost would continue to escalate.
        Even to provide combination therapy to all the roughly 800
    patients currently receiving assistance through the ADAP in
    Mississippi would require $10 million. Beginning April 1, our
    Ryan White funds increased to $2 million, leaving a potential
    unmet need of $8 million. Other states face similar situations.
    According to information provided by the National Association
    of State and Territorial AIDS Directors, the average state
    contribution to the ADAP is 24 percent of total ADAP funding.
    The potential need far outstrips the available state dollars
    even if states radically increase their contributions.
        All states will all have to consider contributing state
    funds to the drug treatment of persons with HIV and AIDS or
    sharply increasing their current contribution. We have
    recommended that our state's Legislature conduct hearings into
    AIDS treatment funding before and during the upcoming state
    budget development process, and I am confident that they will
    do so. I anticipate that at least some state funding for AIDS
    drugs will be seriously considered in their next session.
        But it is not likely that the state will be able to afford
    the multi-million dollar cost of treating the thousands of
    persons needing the new treatments. Without increased federal
    funding for the Ryan White program, it may not be possible even
    to meet the needs of those already on the ADAP in most states.
    To meet the needs of the far greater number not now being
    treated represents a national challenge of immense proportions.
        I offer four recommendations to this committee and to the
    congress.
        First, even as you consider treatment and research needs
    for AIDS, maintain a focus on and funding for prevention. If we
    do not, the need for treatment will become impossible to meet.
        Second, at least some increase in Ryan White funds for AIDS
    drugs is needed now, and additional increases, likely
    substantial, should be considered in the future.
        Third, in considering potential state contributions to AIDS
    drug funding, take into account the competing needs for states
    to address other serious health problems, including heart
    disease, stroke, cancer, and injuries.
        Fourth, as a part of any consideration of Ryan White
    funding, address the issue of more equitable distribution of
    AIDS treatment funding among states with and without Ryan White
    Title I metropolitan areas. The current system penalizes more
    rural states without large cities heavily affected by AIDS.
        I'll be happy to answer any questions the Committee has, or
    address any issues not covered that you wish to raise.

                        summary statement of Danyse Leon

        Senator Specter. We return now to Ms. Danyse Leon, an HIV-
    infected mother of two HIV-infected children. She lives with
    her children in Philadelphia, where they receive assistance
    from the AIDS Drug Assistance Program for coverage of their
    drug therapy. They also receive care services through the
    Circle of Care Project of the Family Planning Council of
    Southeastern Pennsylvania, a program supported entirely by the
    Ryan White Care Act.
        Ms. Leon has been referred to us by a distinguished--
    Dorothy Mann from the Family Planning Council of Southeastern
    Pennsylvania. Welcome, Ms. Leon. We look forward to your
    testimony.
        Ms. Leon. Good afternoon, Senator Specter, and fellow
    Members of the Congress. I am the mother of a 10-year-old son
    and a 7-year-old daughter from Philadelphia, PA. We are all
    living with AIDS. I receive Ryan White care and title IV
    services through the Circle of Care and the Family Planning
    Council of Southeastern Pennsylvania, which serves children,
    youth, mothers, and families living with HIV and AIDS in
    Pennsylvania.
        My children and I receive AIDS drug benefits from the
    Pennsylvania State AIDS Drug Assistance Program. My family and
    I also receive AIDS services through the Opportunity for
    Persons with AIDS.
        I am pleased to testify today on behalf of the Circle of
    Care and AIDS Policy Center for Children, Youth, and Families.
    I am here today to talk about the disease that upsets our
    lives, and I hope that you will hear my words and hold them
    close to your heart.
        I have been living with HIV for approximately 10 years. We
    learned about our HIV status after the birth of my second
    child. Both of my children have been living with HIV all of
    their lives, and do not understand what it means to be HIV
    negative.
        What they do understand is doctor's visits, demanding drug
    regimens, side effects, and HIV-related illnesses. In the past,
    my children have failed to thrive and were often ill, and
    recently something changed. At the suggestion of my physician
    at Strawberry Mansion Clinic, which is part of the Circle of
    Care, my children were prescribed Crixivan, one of the new AIDS
    drugs called protease inhibitors, combined with DDI and AZT.
        They are doing much, much better, and for the first time I
    have hope. Their viral load has been reduced from a high count
    of 44,000 to just under 500 in 1 month. Access to these new
    drugs has literally helped to save our lives.
        As a woman living with HIV, I have also been helped by the
    latest advances in AIDS treatments. After seeing the beginning
    stages of success for my children, my physician also prescribed
    Crixivan for me. I took it for about 6 months, and retreated
    due to kidney problems, but I am hoping to start again with
    Crixivan or other new AIDS drugs in the next few months.
        The combination of new AIDS drugs has given me new hope
    that I will be able to live a healthier life with my family.
    For once in my life I have hope for the future of my children's
    lives, and I have hope that I will be here with them.
        But Members of Congress, not all people have access to the
    new AIDS drugs. I am not a public policy expert, and I do not
    understand pricing issues or the Federal programs related to
    AIDS, but I do know that Congress, local communities, and the
    drug companies must do more to provide access to these new
    drugs for everyone. It costs me approximately $3,000 a month
    for my family to be on the new combination drug therapy. This
    is expensive, but it must be less expensive than staying in the
    hospital or going for more doctor's appointments.
        We must do more to test the results of the new AIDS drugs,
    and we must do more to test the drugs in children and pregnant
    women. You may not know this, but right now none of the new
    protease inhibitor drugs or combination therapies have been
    approved for pregnant women, and only two new protease
    inhibitor drugs have been formulated for use in children, and
    approved by the FDA for children with AIDS.
        One of these drugs is only approved for children 2 years
    and older. The other drug is approved by the FDA for all
    children with AIDS. So that means that drugs like Crixivan and
    others are given to my children by our doctor on an off-label
    basis. Children and moms need safe access to these new drugs,
    and more testing and research are needed.
        I have heard other people today talk about the need to
    educate doctors and patients about the new AIDS drugs and what
    the new AIDS drugs means for the Ryan White Care Act Program,
    and I have learned about new AIDS drug treatment guidelines
    that will be released soon by NIH. Families and doctors need to
    be educated about how to use those new drugs. Doctors need to
    be trained on how to use the new drugs with children and youth
    living with AIDS.
        I have been told that the new guideline that will be
    released by NIH will not include guidelines for children with
    AIDS, and that the guidelines will be released separately by
    NIH. I feel the pediatric guidelines should be included with
    the adult guidelines when they get released, so that everyone
    has the most current information, and families and other
    children and youth need to be educated about how to take those
    drugs together in partnership with the doctors.
        My story is not different from other families across the
    United States. Often women and parents seek treatment only
    after their children have been diagnosed with HIV, and this is
    wrong. Too often families struggle with taking the new
    complicated regimen of AIDS drugs, and are confused about what
    to take. To change this, American families need the commitment
    to all Federal AIDS programs.
        My family and my family from Philadelphia rely upon
    Medicaid and the Ryan White Care Act, which provide us with HIV
    care that helps us cope with the new AIDS drug regimen. Without
    care, without AIDS research to continue to study these drugs,
    without AIDS housing and without AIDS prevention we have no
    chance in succeeding with the new AIDS drugs or preventing
    further HIV infections.

                               prepared statement

        I hope for the day that there will be a cure for HIV and
    AIDS. I hope that parents will not have to watch their children
    die from HIV. People suffering from HIV and AIDS need your
    help--the help they receive from Federal AIDS programs like the
    Ryan White Care Act and the AIDS Drug Assistance Program to pay
    for these drugs. This will save our lives and our families.
    Please continue to support me and my family.
        Thank you.
        Senator Specter. Thank you very much, Ms. Leon.
        [The statement follows:]

                       Prepared Statement of Danyse Leon

        Senator Specter, Representative Pelosi, and Members of the
    Senate and House Appropriations Subcommittee on Labor, Health
    and Human Services, Education, and Related Agencies, my name is
    Danyse Leon and I am the mother of a ten year-old son and seven
    year-old daughter from Philadelphia, PA. We are all living with
    HIV/AIDS
        I receive Ryan White CARE Act Title IV services through the
    Circle of Care Project of the Family Planning Council of South
    Eastern Pennsylvania, and my children and I benefit from the
    Pennsylvania state AIDS Drug Assistance Program. I am pleased
    to testify today on behalf of the Circle of Care Project and
    AIDS Policy Center for Children, Youth & Families, which
    represents 350 HIV health care projects across the country.
        I am here today to talk about a disease that dominates our
    three lives--and I hope that you will hear my words and hold
    them close to your heart.
        I have been living with HIV for approximately ten years. We
    learned about our HIV status after the birth of my second
    child. Both of my children have been living with HIV all of
    their lives, and do not understand what it means to be HIV
    negative.
        What they do understand is our continual doctor visits,
    demanding drug regimens, and bouts of drug side-effects, and,
    of course, HIV-related illnesses. In the past, my children have
    failed to thrive and were often ill. Then, recently, something
    changed
        At the suggestion of our physician at Strawberry Mansion
    clinic, which is part of the Circle of Care Project, my
    children were prescribed Crixivan--one of the new AIDS drugs.
    Combined with DDI and AZT, they are doing much, much better and
    for the first time, I have hope, real hope. Their viral load
    has been reduced from a high count of 44,000 to just under
    5,000. Access to new AIDS drugs has literally helped to save
    our lives.
        As a woman living with HIV, I have also been helped by the
    latest advances in AIDS treatments. After seeing the beginning
    stages of success for my children on Crixivan, DDI and AZT, my
    physician also prescribed Crixivan for me. After six months I
    retreated from this therapy due to kidney problems--but I am
    hoping to start again with Crixivan, or other new AIDS drugs,
    in the next few months
        The combinations of new AIDS drugs have given me new hope
    that I will be able to live a healthier life with my family.
    For once in my life, I have hope for the future of my
    children's lives, and I have hope that I will be here with
    them.
        But, members of Congress, not all people have access to the
    new AIDS drugs. I am not a public policy expert and I do not
    understand pricing, issues or the federal programs related to
    AIDS. But I do know that Congress, local communities and the
    drug companies must do more to provide access to these new AIDS
    drugs for everyone. It costs approximately $3,000 per month for
    my family to be on new AIDS drug therapies. This is expensive,
    but it must be less expensive than staying in the hospital or
    going for more doctors appointments.
        We must do more to test the results of the new AIDS drugs,
    and we must do more to test the drugs in children and pregnant
    women. You may not know this, but right now none of the new
    protease inhibitor drugs or combination therapies have been
    approved for pregnant women, and only 2 new protease inhibitor
    drug has been formulated for pediatric use and approved by the
    FDA for children with AIDS. One of these drugs is only approved
    for children 2 years and older. That means that drugs like
    Crixivan and others are given to my children by our doctor on
    an off-label basis. Children and Moms need safe access to these
    new drugs and more testing and research needs to be done
        My story is not different from other families across the
    United States. Often, women and parents seek treatment only
    after their children have been diagnosed with HIV and this is
    wrongs. Too often, families struggle with taking the new
    complicated regimen of AIDS drugs. To change this, American
    families need the commitment of Congress to all federal AIDS
    programs. Our families rely on Medicaid and the Ryan White CARE
    Act which provides us with comprehensive HIV care that helps us
    cope with the new AIDS drug regimen. Without care, without AIDS
    research to continue to study these drugs, without AIDS
    housing, and without AIDS prevention, we have no chance in
    succeeding with the new AIDS drugs or preventing further HIV
    infections.
        I hope for the day that there will be a cure for HIV and
    AIDS. I hope that parents will not have to watch their children
    die from HIV. People suffering from HIV/AIDS need your help--
    the help they receive through federal HIV/AIDS programs,
    including the AIDS Drug Assistance Program, to pay for the new
    AIDS drugs and provide access to care. This will save our lives
    and our families.
        Please continue to support me and my family Thank you.

                       summary statement of kim williams

        Senator Specter. We now turn to Ms. Kim Williams, who
    serves on the board of directors for the South Mississippi AIDS
    Task Force. She first learned she was positive when she was 17
    and pregnant, and since that time, Ms. Williams unfortunately
    lost her child and the child's father to AIDS.
        She is an American Red Cross HIV/AIDS educator, and speaks
    publicly about her experience as a person living with AIDS.
        Thank you for joining us, Ms. Williams, and we look forward
    to your testimony.
        Ms. Williams. Thank you. Good afternoon. My name is Kim
    Williams, and I am a person living with HIV from the State of
    Mississippi.
        I would like to thank Senator Specter and Senator Harkin
    and my Senator, Senator Cochran, for asking me, and listening
    to me today, and the other people on this panel.
        I would first like to thank Senator Specter and the members
    of his committee for the past support you have given to the
    ADAP programs. Through this support you have improved the lives
    of tens of thousands of people across the country who are
    infected and affected by HIV disease.
        Also, it is my understanding that Senator Specter voted
    against the budget agreement because it failed to protect HIV
    research and health care programs like ADAP. On behalf of
    people with AIDS I would like to thank you again, Senator
    Specter, and others who have supported you, for your courage in
    allowing compassion rather than political policies to guide you
    and help change your vote.
        My story is a simple one that has been made complex by HIV
    disease, for you see, without this disease I would be a regular
    working mom, taking care of my child and making the best lives
    for us. However, I have lost my child, Jeremy, to this disease
    and now I face my daily struggle to cope with living with HIV
    alone, without my son.
        And in the midst of the struggle, even with medical
    complications from the one drug I took myself, just like her,
    it affected my kidneys, and right now I am not taking anything
    until my kidney gets stronger. I have had two surgeries because
    of the drug.
        But there are a lot of people, and there are a lot of hope
    and a lot of light out there, that people with these drugs are
    still going to be able to take them. There are a lot of drugs I
    have not gotten to take yet, and I know they are going to help.
    There are a lot of drugs that I know now that are helping, and
    without these drugs people do not have much hope.
        Now, since receiving my letters informing me of
    disenrollment from the Mississippi ADAP I sometimes have doubt
    whether I will survive, even though there are drugs out there.
    I have been cut off from the ADAP program because there is not
    enough money there.
        You see, as of July 1, I will have no medical coverage
    whatsoever, and I will have to go back to work. Unfortunately,
    in addition to myself, there are 660 patients who will be
    dropped from the Mississippi ADAP program. Senator Cochran, as
    my Senator I want to ask you personally to help families and
    individuals around the country to gain access to these
    medications. They need to stay alive.
        Senator Specter, you have the power at your disposal. I ask
    you to continue to make this one of the priority programs of
    your committee so that it can continue to help other families
    and individuals who will be able to survive this awful disease.
    We need your help.
        I ask all of you to make my life and tens of thousands of
    other lives throughout this country simpler by committing the
    necessary funding so that I and other people living with HIV
    can continue to receive medications that are extending lives
    and giving people hope and strength.
        I understand the importance of balancing of the budget, but
    I do not understand how you can take someone's life-saving
    medication away. Is there not adequate funding for this
    program? People will die, if they are not poor enough for
    Medicaid, there will be no funding or no access to the AIDS
    drugs, so there is no hope, and without hope you might as well
    lay down and die, because that is what we are going to do.
        We are a great Nation which can send ships into space much
    further than I can ever imagine, and we can place thousands of
    soldiers in a matter of days in foreign lands all across the
    world. Is helping to supply therapies which can save lives of
    citizens living in America more complex? I say no.
        Please help my life, make it more simple, and other people
    like me. Please support the Nation's ADAP Program with enough
    money to allow families and individuals and children to have
    access to these drugs and have healthy and productive lives so
    these parents out here do not have to have their children die.
    Theirs do not have to die like mine did.
        Thank you.

                            new aids drug therapies

        Senator Specter. Thank you very much, Ms. Williams. We very
    much appreciate your being here and sharing with us the
    intimate experience which you have had, and we thank you, Ms.
    Leon, for doing the same.
        Let me begin with you, Ms. Leon, and ask you, how has the
    new medication helped you and your family?
        Ms. Leon. First of all, my children, they used to be sick
    all the time, either with pneumonia or diarrhea, and not being
    able to go in a straight year of school, but since they started
    taking the medicine, it has been like a year ago, they went to
    school all year long, except, of course, they missed to go to
    the doctor's checkups. Otherwise, I did not have that complaint
    this year.
        Senator Specter. So you see real benefits for your
    children.
        Ms. Leon. Definitely.
        Senator Specter. And how about for you, for you too?
        Ms. Leon. Yes; I started feeling better, too.
        And one more thing, because my kids were--because of HIV
    they were not growing, and in 1 year they all got 10, 15 inches
    more. They started gaining weight, and they do look like
    healthy children now, and that is a benefit, I think.
        Senator Specter. Dr. Fauci, these new drugs show
    exceptional promise, but they have just come into widespread
    use. How long will it be before we will have a scientific base
    for reasonable certainty that protease inhibitors do, indeed,
    suppress the virus permanently?
        Dr. Fauci. That will probably take several years. For
    certain, we know that you could detect it--you could suppress
    the virus below the detectable levels of the sensitive assays
    that we have available today.
        Biopsies of lymph nodes, or lymphoid tissue, which are the
    sanctuaries of the hidden places of the virus on people who
    have been on therapy for 1 to 2 years have shown that there is
    still residual virus there. The hope is that as those cells
    turn over and die and the antivirals, namely the triple
    combinations, continue to have their effect, that after a
    period of several years we will be able to know whether or not
    you can do that.
        The projection ranges from 2\1/2\ to 3\1/2\ years. It might
    be longer than that, but the proof of the pudding,
    notwithstanding the projections, will be what happens when you
    stop therapy in someone and see if the virus does come back,
    and that will not happen for at least another few years.

                         medicaid policy on medication

        Senator Specter. Dr. Fox, current Medicaid policy only pays
    for medication if the patient becomes symptomatic and disabled.
    The effectiveness of protease inhibitors make it imperative
    that those affected should be treated earlier. What is the
    likelihood that the Medicaid policy will be changed to conform
    to that reality?
        Dr. Fox. Well, Senator, I cannot speak for HCFA or
    Medicaid. I know that the Vice President is looking at some
    options under Medicaid, but those are not ready to be brought
    forward yet. There are some options under Medicaid, however, to
    provide coverage beyond what we provide now, but that is an
    individual State determination.
        For instance, the 1,115 waivers that are available that
    allow States to go above the existing income guidelines are an
    option now for States, and even though that may require 6 to 12
    months to actually get approved through the process, it does
    offer some opportunity, so I think there are some options under
    Medicaid now.
        There are also some options under the medically needy to
    expand coverage for the disabled in ways that you take into
    account what their current medical bills are, so those options
    we would encourage States to explore as a part of their
    Medicaid Program.
        Senator Specter. I yield now to Senator Cochran.

                         drug therapy funding shortage

        Senator Cochran. Mr. Chairman, thank you very much for
    including this panel in our hearing today. We deeply appreciate
    it because we are confronted with an emergency of substantial
    proportions in Mississippi because of the breakdown in the
    funding that has been available to help pay the cost of these
    drugs to deal with the consequences of HIV/AIDS.
        Let me first start with Dr. Fox and ask you, if I can, how
    do we explain to people what happened? When we look at the
    facts that in Mississippi here we were participating in a
    Federal program to help pay the costs of drugs and we had
    included a large segment of the State's affected population who
    were eligible to participate, and then halfway through the
    fiscal year we have to really tell people that there is no more
    money to continue paying the cost of these drugs, how could
    that have happened? What happened?
        Dr. Fox. OK. Senator, to begin with, there has been no
    funding reduction in this program. The dollars actually, as I
    said earlier, have increased quite substantially over the last
    couple of years.
        What has happened has been the change in the therapy, the
    fact that you go from one-drug to three-drug therapy that you
    begin to cover a large number of patients. So it is the therapy
    and the implications financially of that that have actually
    changed. There has actually not been a reduction of funding
    from the Federal standpoint. There has been an increase over
    the last 2 years, but there has been a dramatic change in the
    treatment protocol, and I think that will become more so as the
    guidelines come out and become generally accepted.
        Senator Cochran. Now, it seems to me that this is a matter
    of some emergency, and I wonder if you know why the
    administration did not include as a part of its supplemental
    budget request increased funds to help deal with the
    consequences of these events.
        Dr. Fox. I do not think I have the information to answer
    that question, Senator.
        Senator Cochran. Dr. Fauci?
        Dr. Fauci. I certainly do not.
        Senator Cochran. Let me ask whose responsibility is it to
    alert the administration to a problem that has to be obvious to
    somebody in the management of health programs for this
    administration?
        Dr. Fox. Senator, let me just comment again, we are working
    on trying to piece together the information from HCFA. We have
    to go to every individual State Medicaid program. We do not
    have a good picture of what private insurance pays for. We know
    that each State varies in its State support. Part of the
    problem is trying to put the total picture together so that we
    have an accurate reflection of what the need is.
        We do know there is a budget agreement and there are going
    to be constraints on financing, so we are in the process of
    trying to put that together, and hopefully have an accurate
    number, and that is not an easy task to do. It is something
    that needs to be done, and we are working on it, but it is
    something that is very difficult to come by.
        Senator Cochran. It seems to me that it is a matter of some
    urgency, and I would hope that a task force could be put
    together by the administration and selected State department
    health officials such as Dr. Thompson from our State to try to
    help map out a strategy for coping with this in the most humane
    and effective way possible.
        How do we start that movement? Is this a good place to
    start today to put folks on notice that that is what we expect
    to happen?
        Dr. Fox. Well, certainly, we have had this process. I have
    been at HRSA for 3 months, and we have been working on this
    from before I got out there, and we certainly tried to
    accelerate that since I have been there to try to put this
    together, and we are working toward trying to come up with a
    number. So there is a lot of effort going on. We have had
    several discussions with HCFA to try to get those numbers.
    Again, we have called around to individual States. So there is
    an attempt right now to do that, and I am hopeful at some point
    we will have that information.

                       termination of funding assistance

        Senator Cochran. Dr. Thompson, I know it was a tough job
    for you to have to write a letter to 600 people in the State of
    Mississippi to tell them they were not going to be able to get
    funding assistance to help pay the costs of these drugs on this
    program. Tell me what that was like.
        Dr. Thompson. First let me say that we have been able to
    locate and transfer sufficient funds from a variety of one-time
    noncontinuing sources that we are going to be able to retain
    400 of those people on the program at the level of medication
    they were previously receiving, not for the new protease
    inhibitor combinations that they had not yet begun to receive.
        So at this point we are only going to have to drop from the
    program those persons who have Medicaid coverage which will
    provide five drugs, not necessarily enough, but at least some,
    and those persons who had private insurance or whose incomes
    were too high for the program.
        Still, even for those people who will have some coverage
    but not complete coverage, I hope I never have to participate
    in the writing of such letters again. It is not a pleasant
    thing. It is much less pleasant to receive one, I am sure.
        The problem we have is a problem of success. Our money, as
    Dr. Fox said, has not gone down, it has actually gone up. It
    has not gone up fast enough. The cost of therapy has gone up
    tenfold. In 1996, the average cost per patient in our ADAP
    program was $1,200 a year. The cost for the new therapy is
    $12,000 a year. We are faced with the availability of something
    that shows great promise, but it comes at great, great expense,
    and that is the emergency that we have now. How do we take
    advantage of this new therapy, in our State, in other States,
    because of what it costs.
        Senator Cochran. Ms. Williams, I appreciate very much your
    coming here today. You received one of these letters, did you
    not?
        Ms. Williams. Yes, Senator.
        Senator Cochran. Could you tell us in practical terms what
    the consequences for you and your life will be because of this
    development?
        Ms. Williams. It helped, since I am not taking medicine
    right now, the AZT and I believe it was 3-TC I was getting from
    it. It will not affect it that much at this moment, but 1 month
    from now--I was planning on going in 1 month or so down the
    road--the doctor was planning on putting me back, and I was
    planning on going back to work, so, therefore, I lose my
    Medicaid, so, therefore, the money for those drugs are going to
    have to come out of my pocket now, and they are not cheap.
        Senator Cochran. Dr. Fox, you and I did talk before this
    hearing started, and I commend you for your efforts to explore
    the options for dealing with this, not just in requesting
    additional funds from Congress, which, of course, we know we
    have had huge increases in allocations of Federal resources for
    this program. And I think right now the Federal Government is
    investing more per victim in AIDS research and other programs
    under the Ryan White CARE Act than any other illness in
    America. Is that not correct?
        Dr. Fox. Well, I do not know how it compares, but certainly
    there is over $1 billion that goes into this program now,
    Senator. I would just tell you there has been a recent study
    looking at cost per years of life saved, and the cost per years
    of life saved for a person with AIDS under this program is
    about $10,000, in that range, per year. Compare that, a 50-
    year-old man, my age, who gets a coronary bypass. The cost per
    year of life saved is $113,000. So we feel like that certainly
    this is a good buy, and we should be doing it. Again, the
    question is how to distribute the cost among the different
    sources.

                        allocation of funding assistance

        Senator Cochran. Dr. Thompson, one idea somebody advanced
    is that the formula for allocation of the funds really benefits
    the big cities, and States like Mississippi, which does not
    have really big cities in it, end up getting the short end of
    the stick. Is that true?
        Dr. Thompson. Yes, Senator, it is. Although the formula,
    when it was devised, may have been very appropriate at that
    time because the epidemic was concentrated in large cities,
    that is increasingly not the case. Right now the problem is
    that in essence the formula allows persons with AIDS only to be
    counted, and the issue is no longer how many people with AIDS
    do we have and may need treatment, but how many people with
    HIV, many of whom have had HIV for a long time and may not get
    AIDS with these new treatments.
        That is not taken into account, and in the case of the
    title I cities, the persons with AIDS who are counted are in
    essence counted twice in those States that have title I cities
    versus those that do not have title I cities, as 29 States do
    not.
        Senator Cochran. We explored the possibility of directing,
    in language in our supplemental appropriations bill, the
    administration to reprogram funds from other parts of the AIDS
    Program, and those funds have already been obligated or
    allocated, and that is not a productive effort. And we have
    explored other options, as well. But it seems to me that we
    have got to get together and decide what to do about this, and
    the time for action is now, and your cooperation, your advice
    and counsel as we go through this process will be very
    valuable.
        We appreciate your being here to help highlight the
    importance of the program and help us figure out what to do
    about it. Thank you all very much.
        Senator Specter. Thank you, Senator Cochran, and thank you
    all for coming. I would like to recognize Congresswoman Nancy
    Pelosi, who is in the hearing room. Congresswoman Pelosi has
    been an outstanding advocate for AIDS research and AIDS
    treatment, and has consulted with the subcommittee very
    substantially on the hearing which we had today, and in fact
    had been the initial party requesting it, and we thank her for
    her contribution. And every now and then the Senate catches up
    with what the House is doing.

                         additional committee questions

        Thank you very much. There will be some additional
    questions which will be submitted for your response in the
    record.
        [The following questions were not asked at the hearing, but
    were submitted to the Department for response subsequent to the
    hearing:]
                         Additional Committee Questions
                        nih human gene transfer database
        Question. Dr. Varmus, in November 1996 the NIH published in the
    Federal Register a notice regarding the reconfiguration of the
    Recombinant DNA Advisory Committee (RAC). The notice stated that the
    NIH intended to create and maintain public access to human gene
    transfer clinical trial information. What is the status of the
    development of this database? What specific data will be required for
    this database from sponsors pursuing human transfer gene therapy
    trials? When will the database be put in place?
        Answer. Development of the NIH Human Gene Transfer Database is a
    critical component of my overall proposal to enhance NIH oversight of
    human gene therapy research. Access to timely information about these
    clinical trials will serve not only the needs of the NIH with regard to
    identifying gaps and overlaps in basic and applied research, but will
    facilitate rapid responses to adverse events by the Food and Drug
    Administration (FDA). This timely dissemination of adverse events by
    the NIH Office of Recombinant DNA Activities (ORDA) has been applauded
    by FDA representatives as an exemplary mechanism for communicating such
    events to the scientific community. This rapid communication process
    has allowed immediate implementation of appropriate study modifications
    in response to such events, without execution of a clinical hold on
    related studies. Public access to gene therapy clinical trial
    information has served as an exceptional public education tool that has
    fostered acceptance of this once ``feared'' novel area of biomedical
    research.
                                     status
        An evolutionary development approach is being implemented in
    relation to this database to permit deployment of initial functionality
    and subsequent growth to the final system that will contain all
    essential query and reporting functionality. A brief chronology
    relevant to implementation of the NIH Human Gene Transfer Database is
    described below:
        (1) June 1997--System requirements were completed by the Office of
    Recombinant DNA Activities (ORDA) and the Division of Computer Research
    and Technology (DCRT), NIH.
        (2) July 1997--A task order was executed under the NIH Computer
    Equipment Resources and Technology Acquisition for NIH (CERTAN)
    contracting mechanism for system design and development of the client/
    server-based information management system; vendor responses are due
    July 23, 1997.
        (3) August 8, 1997--Written and oral evaluations of vendor
    responses by the DCRT technical review panel will be completed.
        (4) October 1, 1997 (fiscal year 1998)--Implementation of Phase I
    development. Phase I will consist of local database development
    including desk-top system interface and basic local query and reporting
    capabilities. Phase I will be developed for use by the ORDA staff and
    other local authorized offices and users.
        (5) October 1, 1998 (fiscal year 1999)--Phase I development
    completed. Phase II development initiated. Phase II will consist of
    expanded local query and reporting tools; expanded data entry;
    incorporate additional database functionality; and World Wide Web (WWW)
    summary information.
        (6) Date undetermined--Completion of Phase II and implementation of
    Phase III. Phase III will consist of WWW remote data entry and WWW
    query and reporting capabilities.
                     specific data captured by the database
        Data captured in the Submission Phase includes the following
    information: (1) title of clinical protocol; (2) principal
    investigators; (3) clinical trial sites; (4) sponsor; (5) local
    institutional contacts; (6) description of treatment groups, e.g., dose
    range and gender of subjects; (7) number of subjects proposed for
    treatment; (8) objectives and rationale of the proposed study; (9)
    funding sources; (10) vector name and components, e.g., functional or
    marker gene, parental vector, and vector type; (11) in vivo or ex vivo
    target cell; (12) gene delivery method; (13) indication; (14) route of
    administration; and (15) inclusion/exclusion criteria. Data captured in
    the Follow-up Phase include: (1) serious adverse events (with clear
    indication if such events are directly related to the transgene); (2)
    evidence of immune response; (3) evidence of gene transfer into target
    cells (ex vivo and in vivo); (4) evidence of gene expression (ex vivo
    and in vivo); (5) evidence of persistence of transduced cells; (6)
    problems associated with gene transfer; (7) evidence of biologic
    activity; (8) number of subjects entered on the study; (9) number of
    deaths; (10) number of autopsies conducted and any relevant gene
    transfer data derived from post-mortem analysis, e.g., potential
    transmission to the germ-line; (11) relevant assays that were conducted
    to assess safety and gene transfer and expression; (12) evidence of
    replication-competent virus and viral shedding; (13) accomplished goals
    and objectives; and (14) any relevant publications resulting from the
    clinical trial.
        It is important to note that data captured in the follow-up phase
    is submitted in summary format. This database is not intended to be a
    patient registry; therefore, there will be no access to patient
    identifiers that would undermine patient confidentiality. It is also
    recognized that the summary manner in which follow-up data is captured
    does not in any way jeopardize an investigator's ability to publish
    clinical trial results in peer-reviewed journals. Investigators are
    clearly cautioned against submitting in-depth results that could
    threaten publication of such results. An example of the summary
    information requested of investigators is evidence of gene transfer.
    Rather than require a full description of the assay conditions and
    subsequent results, investigators may summarize their findings as
    follows: 2 of 4 assays were positive demonstrating gene transfer by PCR
    analysis. Although this information implies a preliminary assurance
    that the investigators were technically capable of transferring the
    gene into the target cell, there is no information provided about the
    assay conditions or parameters that could jeopardize either patient
    confidentiality or peer-review publication.
                     support for young clinical researchers
        Question. Dr. Varmus, I continue to hear grave concerns expressed
    in the research community regarding our current system of grant funding
    and the lack of programs supporting young clinical investigators. What
    action do you recommend should be taken to shore-up support for
    clinical research and to ensure a cadre of trained clinical
    investigators in the future?
        Answer. The NIH recognizes that attention is needed for beginning
    clinical researchers to ensure an appropriate cadre of research
    scientists for the next generation. Beginning clinical investigators
    are especially vulnerable because their ability to establish
    independent research careers is potentially jeopardized due to the
    increasing competition for research support and the substantial amount
    of debt these clinicians have incurred by the end of their training.
        In order to enhance the quality of clinical research training
    programs and to attract beginning investigators to careers in research,
    the NIH is in the process of developing a number of possible
    strategies. These include possible new award mechanisms both for
    institutions and for individuals, as well as other strategies. First,
    the NIH is exploring the possibility of offering clinical research
    experiences for medical and dental students through the existing
    institutional training award and individual fellowship award
    mechanisms. In addition, some new possible mechanisms are being
    considered. The NIH in considering awards aimed at assisting
    institutions in attracting high quality, motivated candidates and
    encouraging the organization of institutional resources for training
    programs in patient-oriented research. We are also considering
    clinically oriented individual awards, both for those just beginning
    clinical research careers or to enhance the capabilities of young
    clinicians already involved in research.
        In addition, NIH is examining the feasibility of establishing a
    loan repayment program for clinical researchers. The NIH loan repayment
    program is currently limited to scientists in the Intramural research
    program. To broaden the eligibility for the loan repayment program to
    include clinical researchers at academic health centers throughout the
    country would require a legislative change.
           review of translational and clinical research applications
        Question. Dr. Varmus, I have been informed that an imbalance still
    exists between basic and translational researchers on NIH peer review
    panels. What steps has the NIH taken to redress this issue and how have
    the composition of these peer review panels changed, or the peer review
    process been altered, in response to create a level playing field for
    the review of translational research proposals?
        Answer. The Division of Research Grants is responsible for the
    review of greater than 70 percent of submitted applications. Since
    questions about review group composition are typically addressed to the
    Division of Research Grants (DRG), the DRG Director, Dr. Ellie
    Ehrenfeld, has undertaken two initiatives to specifically address the
    issue of review of translational and clinical research applications.
        Shortly after Dr. Ehrenfeld was appointed as the new Director of
    DRG in January of 1997, she hired a consultant, Michael Simmons, M.D.,
    Professor of Pediatrics and former Dean of the University of North
    Carolina Medical School, to work with a committee of Scientific Review
    Administrators, involved primarily in the review of clinical
    applications, and to recommend how translational/clinical research
    might be better reviewed. Drs. Simmons and Ehrenfeld have met with the
    Directors of each Institute and Center with a clinical research
    portfolio to identify specific concerns, and have initiated selective
    outreach efforts to clinical professional societies. The committee has
    made some recommendations that soon will be tested and evaluated.
        Because continued dialogue with the outside community is critical
    to the success of this activity, the second DRG initiative is the
    appointment of a Panel on Scientific Boundaries for Review, as a
    subcommittee of the DRG Advisory Council, to analyze the optimal way to
    organize, constitute, and direct review groups. The members of this
    blue-ribbon panel, consisting of persons with scientific stature in
    diverse fields, will be asked to consider whether or not reorganization
    of the study sections is needed, and if so, to recommend a strategy by
    which the breadth of disciplines supported by the NIH could be
    reconstituted into newly defined, intellectually defensible scientific
    domains to assure that all areas of science, including translational/
    clinical research receive due consideration. These recommendations may
    serve in turn as the basis for reorganizing scientific review groups.
        In addition, the Peer Review Oversight Group (PROG), chartered in
    1996 and charged with addressing issues of review policy common to the
    entire NIH, is working on this issue. PROG is made up of
    representatives from the ICDs and members of the extramural scientific
    community, and is chaired by Dr. Wendy Baldwin, the Deputy Director for
    Extramural Research. Dr. Ellie Ehrenfeld is a permanent member of PROG.
    This oversight advisory group has been carefully examining the issue of
    whether in fact there are differences in the review of different types
    of research, for example basic scientific research performed in the
    laboratory and clinical, patient-oriented research. At the present
    time, PROG has a subcommittee examining the composition of panels for
    the review of patient-oriented clinical research, and is still working
    to address the issue of composition of review panels; no
    recommendations for change have yet been made by these groups.
        These three initiatives that are currently underway should provide
    us with answers to questions regarding any imbalance in the review of
    translational/clinical research, ways to redress any deficiencies that
    may be uncovered, and provide us with an analysis of the optimal way in
    which to organize, constitute, and direct review groups.
                          clinical research databases
        Question. Dr. Varmus, legislation requiring the Secretary to
    establish a resource information and clinical database for individuals
    with serious or life-threatening diseases is under consideration by the
    Congress (S. 87 and H.R. 482). I am advised that the legislation would
    require the NIH to establish and maintain this databank. Has the NIH
    done a review of the cost to establish and maintain a patient database
    outlined in the legislation?
        Answer. The National Institutes of Health (NIH) has not conducted a
    review of the cost of providing a central resource for information on
    clinical trials as specified in S. 87 and H.R. 482. There are three
    dimensions to the scope of such a resource and NIH has experience with
    only one. The legislation calls for establishment of a database across
    the agencies of the Department of Health and Human Services (DHHS) to
    provide information on ``research, treatment, detection and prevention
    activities related to serious or life-threatening diseases and
    conditions.'' There are several extant databases of NIH-supported
    clinical research developed and maintained by the Institutes or the
    Office of the Director and several are available to the public through
    the Internet. These databases and the responsible organization include:
    Physicians' Data Query (PDQ)--National Cancer Institute; AIDSTRIAL--
    NIAID; Clinical Center at NIH--Clinical Center; Rare Disease Database--
    Office of the Director; Alternative Medicine--Office of the Director;
    and Dietary Supplements--Office of the Director.
        All can or will be accessible through the NIH Home Page or the
    National Library of Medicine site. Programs of other DHHS agencies are
    not represented as these contain only information on projects reviewed
    and financially supported by NIH. There are no publicly accessible
    databases for other conditions. The annual cost of creation and
    maintenance for each of these databases has ranged from $1 million to
    $30 million.
        The second dimension of the legislation relates to providing an
    information system including toll-free telephone communications. The
    NCI and Clinical Center already provide this service. From their
    experience, the information must be provided from a decentralized
    source (e.g., at Institute level) for it to be correct, current and
    useful. We have not made an estimate of these costs.
        The third dimension would be development of a database and
    information system for all clinical trials, whether Federally or
    privately funded. This would be an enormous undertaking and many
    private sponsors (e.g., pharmaceutical firms) have not been interested.
    The quality of the study and of the information would be dependent on
    the investigator and could not be verified by NIH, and thus would have
    doubtful validity.
        Importantly, the information for all databases and telephone
    responses must be updated every six months. This means that annual
    maintenance costs of these data sources is as expensive as the original
    development. The principal costs are related to creation of a valid
    informational source and disseminating this information.
        Question. How much is the NIH currently spending on databases of
    this nature?
        Answer. The development and maintenance of databases of clinical
    research have been the responsibility of organizational components
    (Institutes, Centers) at the NIH. The current databases and information
    systems cover only NIH-supported research and they vary greatly in size
    and complexity (electronic database or toll-free telephone or both).
    These programs are integrated with other programs and it is not
    possible to determine specific costs without careful dissection. The
    range of costs for each information system is about $1 million to $30
    million per year, depending on the size and services provided.
                                 human cloning
        Question. Dr. Varmus, the National Bioethics Advisory Board has now
    deliberated and made recommendations concerning the use of human
    cloning to create a child--What is your reaction to their
    recommendations? Did NIH participate in crafting the legislation the
    President has submitted to the Congress?
        Answer. I fully support National Bioethics Advisory Commission's
    (NBAC) recommendations on the need for restrictions on the use of human
    cloning to create a child. I also agree with NBAC's recommendation that
    research involving the cloning of human DNA and cell lines should be
    protected under any legislation to ban the cloning of human beings to
    create a child. NIH did provide comments on the legislation the
    President has submitted to the Congress.
        Question. The recommendation would not ban all human cloning, what
    are some of the promising aspects of cloning technology for medical
    science and treatment?
        Answer. I believe that this technology has the potential to yield
    great benefits in many areas of medical research and treatment. One
    application is in the use of animals for medical research. This
    technology could reduce the numbers of animals needed for experiments,
    since differences in genetic background that often lead to experimental
    variation would be eliminated. Cloning technology could also speed the
    reproduction of animals that have been engineered to produce
    therapeutic proteins in milk, or as important animal models for
    disease.
        Another area of importance is the study of how human and animal
    genes are turned on and off. As the NBAC report notes, the basic
    cellular process that allowed the birth of Dolly by nuclear transfer
    using the nucleus from an adult somatic donor cell is not well
    understood. There are many questions about how this process occurred.
    How the specialized cell from the mammary gland was reprogrammed to
    allow the expression of a complete developmental program will be a
    fascinating area of study. Answers to these questions will contribute
    to our overall understanding of how cells grow, divide, and become
    specialized.
        Basic research into these fundamental processes may also lead to
    the development of new therapies to treat human disease. The
    demonstration that, in mammals, as in frogs, the nucleus of a somatic
    cell can be reprogrammed by the environment in the egg, provides
    further impetus to studies on how to reactivate embryonic programs of
    development in adult cells. These studies have exciting prospects for
    regeneration and repair of diseased or damaged human tissues and
    organs, and may provide clues as to how to reprogram differentiated
    adult cells directly without the need for insertion and fusion into the
    egg. A potentially feasible approach is to direct differentiation along
    a specific path to produce specific tissues (e.g., muscle or nerve) for
    therapeutic transplantation rather than to produce an entire
    individual.
        For example, it may one day be possible to use nuclear transfer
    technology to produce bone marrow cells in culture, using, for example,
    skin cells from a patient with cancer, who is undergoing chemotherapy
    which can deplete bone marrow cells. These bone marrow cells could then
    be returned to the patient, without the potential for rejection, after
    the patient has undergone chemotherapy. One could also imagine helping
    people who have been incapacitated by massive burns and need skin
    transplantations by taking any cell from the body and using this
    technology to make skin cells. This technology may one day also be used
    in similar kinds of experiments in neurodegenerative disease,
    remodeling cells to behave as mature nerve cells that will not be
    rejected by the recipient.
        Question. Even with the President's executive order which bans all
    Federal funds for cloning of human beings, what safeguards exist to
    prevent unauthorized attempts?
        Answer. In order to ensure that Federally-supported investigators
    are fully aware of the Prohibition, NIH took several actions. The
    Presidential Prohibition on Federal Funding for Cloning of Human Beings
    was copied and distributed to those NIH staff responsible for grant
    awards and was discussed at a March 5 meeting. The document was also
    attached to the minutes of that meeting, which were distributed
    electronically on the following Monday, March 10. These minutes (with
    attachments) are redistributed by the senior staff throughout the
    Institutes, Centers, and Divisions. In addition, in order to ensure
    that the information is also shared with the extramural community of
    scientists, the Prohibition was also posted on the Office of Extramural
    Research Home Page on March 5. For the intramural community, the
    Presidential Directive was published on March 10 in the Deputy Director
    for Intramural Research Bulletin Board, which is electronically
    distributed to intramural researchers across NIH.
        Additionally, attempts to clone human beings would fall under the
    rubric of human subjects research. Human subjects protections are
    covered by many levels of Federally-regulated review and oversight.
        Federal regulations (45 CFR 46) require that all institutions that
    conduct or support research involving human subjects set forth the
    procedures they will use to protect human subjects in a policy
    statement called an assurance of compliance. An assurance should
    include, at a minimum, (1) a statement of principles governing the
    institution in the discharge of its responsibilities for protecting the
    rights and welfare of human subjects of research conducted at or
    sponsored by the institution, regardless of whether the research is
    subject to Federal regulation; (2) designation of one or more
    institutional review boards (IRBs); (3) a list of IRB members (4)
    written procedures the IRB will follow; (5) written procedures for
    ensuring prompt reporting to the IRB, appropriate institutional
    officials and the Department or Agency head of any unanticipated
    problems involving risks to subjects or other or any serious or
    continuing noncompliance with this policy or the requirements or
    determinations of the IRB. The Regulations also state that ``Compliance
    with this policy requires compliance with pertinent Federal laws or
    regulations which provide additional protections for human subjects.''
    This would include the President's Directive prohibiting the use of
    Federal funds for cloning a human being. NIH peer review committees and
    advisory councils/boards also review human subject protections in
    proposed research submissions.
        NIH program directors provide oversight of award activities to
    ensure adherence to Federal laws and regulations. Intramurally, the
    Scientific Directors of the Institutes and Centers are responsible for
    conducting human subjects research in full compliance with the NIH
    Multiple Project Assurance under 45 CFR 46.
                    alternative and complementary therapies
        Question. Dr. Varmus, on February 14, 1997, I wrote Secretary
    Shalala requesting that her Department prepare for the Subcommittee a
    report on all federal activities involving alternative and
    complementary therapies. The Secretary responded on April 18, 1997
    stating that the interim report will be available by August 1, 1997. I
    am particularly interested in the consolidation into a central database
    all relevant clinical literature on alternative and complementary
    medicine in a form that is accessible and understandable to
    researchers, practitioners and the public. What is the status of the
    Department's review?
        Answer. The NIH has completed its review of the research literature
    items on complementary and alternative medicine as outlined in the
    letter to you from the Secretary on April 18, 1997. This report is
    being edited by the Office of the Director, NIH and will be forwarded
    to the Secretary for her review and approval.
        Question. Will the interim report be completed by August 1, 1997 as
    outlined in the Secretary's letter?
        Answer. We anticipate that the interim report will be completed by
    August 1, 1997 and forwarded to you.
                      5 a day for better health initiative
        Question. Dr. Klausner, what are the NCI's plans with regard to the
    5-a-day program for fiscal year 1998 through 2001? How much did the NCI
    spend over the previous budget period?
        Answer. The 5 A Day project is one of the largest and most
    successful public/private partnerships in nutrition to date, and the
    National Cancer Institute's investment in the 5 A Day Program has been
    a catalyst for substantial industry support. The produce industry
    partners estimate they spend approximately $50 million yearly in
    promoting the 5 A Day message and logo. Also substantial is the amount
    of resources expended by the 55 state and territorial health agencies
    and their coalition partners (totaling over 2000 partners nationwide)
    in 5 A Day community interventions.
        The NCI remains committed to the 5 A Day for Better Health Program.
    Lifestyle and behavioral change research programs, such as 5 A Day, are
    exceptionally important components of our broader efforts to prevent
    cancer and other chronic diseases in this country. NCI plans to
    continue funding for 5 A Day nutrition and behavior change research,
    particularly for research projects focusing on children and youth. In
    addition, to assure widespread adoption of knowledge gained through
    this project, the NCI will conduct technology transfer research.
        Staff from 5 A Day are now in the process of evaluating the program
    and based on that evaluation and advice from our various advisory
    groups, a research and dissemination plan for fiscal year 1998 through
    2001 will be developed. Current plans include convening an advisory
    meeting in the early fall to address future plans for 5 A Day and how
    best to collaborate with sister federal agencies and organizations who
    have similar public health, prevention, and research interests.
        In fiscal year 1996, the NCI spent a total of approximately $6
    million on the 5 A Day for Better Health Initiative. About 70 percent
    of the funds were used to support the final portion of the 5 A Day
    behavior change research initiative, in which preliminary results show
    significantly positive results for increased fruit and vegetable intake
    in all 9 community projects. The nine 5 A Day behavioral change
    research interventions in specific community channels showed an average
    (preliminary findings) positive change in fruit and vegetable
    consumption between .3 and 1.5 servings daily.
        The remaining funds were spent on an interagency agreement with the
    Centers for Disease Control and Prevention in which the NCI funded 6
    small research grants to state health agencies to evaluate 5 A Day
    interventions at the community level, for an ongoing evaluation of the
    national 5 A Day Program, and for research on dissemination of 5 A Day
    health promotion messages conducted by the NCI Cancer Information
    Service.
                        polycystic kidney disease (pkd)
        Question. Dr. Gorden, I understand that there has been great
    progress in understanding the genetics of PKD. What is the NIDDK doing
    to maximize opportunities for expanded research?
        Answer. In the last two years, dramatic progress has been witnessed
    in understanding the cause of polycystic kidney disease (PKD). The
    genes that are mutated in the two commonest forms of PKD (PKD1 and
    PKD2) have been cloned, sequenced and the protein structures deduced.
    We are beginning to understand the possible function of the protein,
    called polycystic, which is defective in patients with PKD1. To further
    encourage scientifically meritorious research, the NIDDK will support
    both a scientific workshop and a Program Announcement (PA) on PKD in
    fiscal year 1997. The workshop will provide a forum for the exchange of
    scientific information among investigators working in the field, with
    particular emphasis on the function of polycystin, the PKD1 protein.
    The PA will solicit research grant applications from both established
    PKD researchers and investigators new to the study of PKD. The PA will
    encourage research to capitalize on the discovery and sequencing of the
    genes for PKD1 and PKD2 and the identification of protein regulated by
    these genes.
        Question. What types of therapies or cures does the latest PKD
    research portend for this disease?
        Answer. Researchers have begun directing their efforts to
    understanding the functions of the PKD1 gene product, polycystin. As
    the interactions and the functions of this protein become clearer, new
    avenues for the treatment and prevention of this devastating disease
    will arise. For example, treatment strategies directed at correction of
    the defects caused by absence of polycystin may prevent cyst formation.
    Alternatively, a number of compounds have recently been shown to reduce
    the rate of renal cyst formation in experimental animal models of PKD,
    and studies are underway to assess their role in the treatment of PKD.
        Question. How much does the NIDDK estimate will be spent on PKD
    research in fiscal year 1997?
        Answer. Recent advances in understanding PKD are impressive and
    encouraging. The NIDDK is proud of our role in supporting much of the
    research that has formed the foundation for these discoveries. NIDDK
    expenditures on PKD research have increased from approximately $1.5
    million in fiscal year 1988 to an estimated $7.9 million in fiscal year
    1997. This five-fold increase over a ten-year period reflects the
    enormous strides that have been made in PKD scientifically.
        Question. How much was spent in fiscal years 1995 and 1996?
        Answer. In fiscal years 1995 and 1996 the NIDDK spent $6.9 million
    and $7.5 million respectively.
        Question. Now that the protein product for PKD has been identified,
    do you expect to expand support for PKD research in fiscal year 1998?
        Answer. The NIDDK will continue to make every effort to fund
    additional PKD research within available resources. We believe that it
    is important to not only support PKD research, but also to ensure that
    funded projects are of the highest scientific merit. We accomplish this
    through a two-step peer review process mandated by law to evaluate
    applications and to ensure high scientific standards among funded
    projects. Of course, applications compete for available funds.
        Question. What are you doing to encourage applications in PKD?
        Answer. In fiscal year 1997, the NIDDK will support both a
    scientific workshop and a Program Announcement on PKD. In 1995, we
    found that a similar approach following the discovery and sequencing of
    the PKD1 gene provided an important forum for researchers to exchange
    information and plan collaborative projects. This initiative resulted
    in 18 new PKD grants in fiscal year 1995.
        Question. Are you collaborating with other Institutes at the NIH
    involved in PKD research?
        Answer. PKD research is a very active area of investigation within
    the NIDDK. We continue to highlight recent impressive achievements in
    PKD research in congressional testimony and in scientific statements
    prepared for the Administration. We have also featured the PKD research
    portfolio whenever possible relative to trans-NIH research areas such
    as research on pediatrics, genetics, or developmental biology. The
    building of the PKD research portfolio is a mutual achievement of the
    PKD research voluntary health communities, and the NIH. We are
    enormously pleased to be a part of this burgeoning research area and
    are always open to new areas of investigation and collaboration.
        Question. Do you have any plans to convene a scientific workshop on
    PKD? If so, when and for what purpose?
        Answer. The NIDDK will be sponsoring a PKD scientific workshop on
    September 10-11, 1997, at the Crystal City Sheraton Hotel, Arlington,
    Virginia. Emphasis will be on the state-of-the-science. The workshop
    will provide a forum for the exchange of scientific information among
    prominent investigators working on PKD and among investigators with an
    interest in the different aspects of PKD-related research. There is a
    particular interest in fostering interdisciplinary research. The
    objectives of the workshop will be to gain an understanding of the
    future direction of PKD research; identify new research opportunities
    and the resources required to foster new research efforts; and to
    expand the cadre of investigators pursuing research in this area. The
    workshop will address five distinct topics: renal morphogenesis and
    cystogenes; genetics of PKD; cell biology of PKD; PKD model systems;
    and genetic diagnosis and interventions. Each session will include an
    overview, an invited presentation, selected abstract presentations, and
    a discussion period. A summary document outlining the final research
    opportunities identified will be produced. This conference will be
    instrumental in framing future directions for PKD research within the
    PKD communities.
                           t-pa treatment for stroke
        Question. Dr. Hall, I understand that if t-PA is administered
    within three hours of the onset of stroke there is a 33 percent
    increase in the number of patients that are free of disability three
    months after the stroke. In light of the limited window of opportunity,
    what has the Institute done to bring attention to the existence of this
    effective acute stroke treatment?
        Answer. The NINDS is so deeply committed to ensuring that this
    major new finding is widely disseminated, that we have undertaken a
    unique role in spearheading an enormous national effort to educate
    professional and public audiences alike about the availability of this
    treatment, and the need to consider stroke, or ``brain attack'', as a
    treatable medical emergency.
        The results of the t-PA clinical trial, demonstrating that ischemic
    stroke can now be treated successfully and in some cases dramatically,
    were reported in December, 1995 in the New England Journal of Medicine,
    and announced at a national press conference held by the NINDS. The
    press conference, with all eight investigators from the t-PA clinical
    trial in attendance, was packed; there were nine television cameras,
    and the story appeared on all the major TV news programs, as well as
    making headlines in nearly every newspaper in the country the next
    morning. The publicity introduced the public to the fact that there was
    now a tangible treatment for stroke which offers eligible patients the
    hope of recovery, and informed physicians that they could now offer
    eligible patients something more than supportive care and
    rehabilitative therapy.
        At the time of the FDA approval of t-PA in June 1996, the Institute
    issued a joint statement signed by the leaders of five major national
    professional groups concerned with stroke care, voicing their support
    for this historic new era in stroke treatment and expressing their hope
    for widespread public education about stroke as an emergency.
        To build on the excitement of treatment advances in stroke, and to
    draft guidelines on how to treat stroke on an emergency basis, NINDS
    organized an historic meeting, a National Symposium on Rapid
    Identification and Treatment of Acute Stroke, which was held on
    December 12 and 13, 1996 here in Washington, D.C. The symposium drew
    more than 400 professionals representing the leadership of over 50
    organizations from broad areas of the health care system. This marked a
    new commitment to work together to advance the treatment of patients
    with stroke. The participants made recommendations for changes in five
    key areas including pre-hospital systems, emergency departments, acute
    hospital care, hospital systems and public education. The proceedings
    from the meeting are being published and will be distributed nationally
    in an effort to increase the number of stroke patients who can benefit
    from treatment, and the number of hospitals who can offer rapid
    treatment to their patients. In addition, the symposium resulted in
    increased national publicity, and led to hundreds of calls from the
    public and health care practitioners and dozens of follow-up articles
    and news stories across the country.
        In the spirit of cooperation generated by the symposium, the NINDS
    has also assumed leadership of the Brain Attack Coalition, an umbrella
    organization of several national organizations that is working together
    to develop and launch a major stroke education campaign.
                          parkinson's disease research
        Question. Dr. Hall, last year's Senate Report requested that the
    Institute give consideration to sponsoring additional scientific
    workshops, new funding mechanisms to recognize innovative approaches
    and attract new investigators, and establishing centers to advance our
    understanding of Parkinson's disease and related treatments. What has
    the Institute done in response to the recommendation of the Committee?
        Answer. This has been a year of great progress and opportunity in
    Parkinson's disease research. The discovery of a gene responsible for
    one form of familial Parkinson's, coupled with the finding that the
    gene product is a known protein with a possible role in other
    neurodegenerative disease, has opened up new directions for research.
    To help build on these genetic discoveries, NINDS and the NHGRI plan a
    workshop focusing on the genetics of Parkinson's later this year. We
    have also had discussions with the National Parkinson's Disease
    Foundation about recruiting families for genetic studies.
        We continue to take advantage of opportunities to provide
    additional funding for especially promising research in Parkinson's
    disease. Dr. Varmus asked this Institute to take the lead in organizing
    a process to identify projects to be funded with the $8 million
    provided this year in the Office of the Director appropriation for
    research in neurodegenerative diseases. I am pleased to report that
    there was considerable enthusiasm on the part of the other Institutes
    for the idea of setting aside a portion of those funds for especially
    innovative research. We expect to complete that process shortly.
        NINDS does not have a centers program specifically for Parkinson's
    disease. We do have authority to award center grants when appropriate
    and we are currently supporting one in Parkinson's disease. We also
    fund two multi project grants dealing with Parkinson's research, and
    three major surgical clinical trials. We believe, however, that a
    program of full-fledged centers may not represent the most efficient
    way to encourage research in a given area. What is most needed in
    Parkinson's research are new ideas that will clarify further the nature
    of the disease and point the way to new treatments. Such ideas are most
    likely to come from individual investigators or as the result of
    activities such as the workshop we sponsored with other Institutes in
    1995.
        Question. What is the current estimate for direct and indirect
    Parkinson's disease research?
        Answer. NIH expects to spend $34,218,000 in fiscal year 1997 for
    direct research and $47,223,000 for research related to Parkinson's
    disease for total funding of $81,441,000.
        Question. How does this compare to fiscal years 1995 and 1996?
        Answer. The information follows:

                                             NIH PARKINSON'S DISEASE FUNDING
                                                [In thousands of dollars]
    ----------------------------------------------------------------------------------------------------------------
                               Fiscal year                                Direct          Related          Total
    ----------------------------------------------------------------------------------------------------------------
    1995............................................................          27,925          44,868          72,793
    1996............................................................          32,353          44,805          77,158
    1997 estimated..................................................          34,218          47,223          81,441
    ----------------------------------------------------------------------------------------------------------------

                                  hepatitis c
        Question. Dr. Fauci, the Committee continues to be concerned about
    Hepatitis C and commends the Institute and the NIDDK for sponsoring a
    recent consensus development conference. What actions has the NIH
    taken, and what recommendations are there for other PHS agencies, as a
    result of the conference?
        Answer. NIH has considered hepatitis C virus infection and disease
    a serious health concern since the virus was identified in 1989. Last
    year, the National Institute of Allergy and Infectious Diseases (NIAID)
    funded four Hepatitis C Cooperative Research Centers which focus on
    multi-disciplinary, integrated research at both the basic and clinical
    levels. One of these investigators, Dr. Charles Rice, just reported the
    identification of an infectious clone making it possible to carry out
    new experimental approaches and develop systems to identify and
    evaluate new therapies and important antibodies arising during
    infection.
        As a result of the conference, NIAID brought together an expert
    group representing basic and clinical research and multiple disciplines
    to assist with the further development of a broad-based strategy for
    progress in hepatitis C. The resulting agenda for the next few years
    was reviewed by the NIAID Advisory Council and a group of experts
    convened by the Digestive Diseases Interagency Coordinating Committee.
    The agenda forms a solid basis for future actions and activities by the
    NIAID. Although these research recommendations were made with NIAID's
    mission in mind, there is interest in having other Institutes, agencies
    and even public organizations join in this research agenda.
        Question. What should be done to contain the spread of Hepatitis C
    and to identify and treat those afflicted with the disease?
        Answer. The Consensus Panel at the Hepatitis C Development
    Conference was effective in identifying all means currently available
    to impact on hepatitis C virus infection and disease. It is important
    to recognize that many times symptoms are mild and common to many other
    illnesses, making diagnosis difficult. Currently, the primary mode of
    acquisition is through injection drug use. Certainly, decreasing this
    practice or providing means to circumvent transfer from person to
    person would have a tremendous impact on the number of new cases and
    future disease burden. The Panel strongly identified the need for new
    therapies. There is a great deal of activity underway in industry and
    NIAID grantees are working in this area. The recent infectious clone
    discovery opens the way for development of new systems with which to
    evaluate antivirals.
        Question. Has research to date found an effective treatment for
    Hepatitis C and/or effective prevention methods?
        Answer. At this point Hepatitis C research is in its infancy.
    Hepatitis C virus is itself complex as is its persistent relationship
    with the human host. Some of the questions that we are trying to answer
    include: 1) why some of those infected recover and others do not, and
    2) why some have no symptoms for a long time and others become ill
    quickly. As more tools are developed and the focus changes from
    descriptive to mechanistic research, progress will occur more rapidly.
                          effect of allergy on asthma
        Question. Dr. Fauci, if allergies are effectively treated in
    children, what impact do you estimate this would have on the incidence
    and severity of asthma?
        Answer. Allergy is a major contributor to asthma severity and
    perhaps to asthma incidence. Effective treatment of allergy should
    substantially reduce asthma severity. A striking example of the
    importance of allergy is the very close association between allergy to
    cockroach and asthma severity that was recently uncovered in the NIAID-
    supported National Cooperative Inner-City Asthma Study (1991-1996). In
    this study, children who were both allergic to cockroach and exposed to
    high levels of cockroach allergen were hospitalized for asthma more
    than three times as often as children who were not allergic to
    cockroach, or who were allergic, but not exposed to high levels of
    cockroach allergen. In addition to the association with cockroach
    allergy, asthma attacks can be triggered by other indoor allergens
    (e.g., dust mites, cat and dog dander, rodents, and molds) and outdoor
    allergens, primarily grass pollens and molds. Furthermore, chronic
    exposure to these aero-allergens may cause patients with asthma to be
    hyper-sensitive to non-allergic triggers of asthma attacks, such as
    upper respiratory viral infections and environmental tobacco smoke.
        Exposure to aero-allergens at an early age (0-2 years of age) may
    also contribute to the prevalence of asthma by inducing changes in
    immune function that predispose to the development of chronic asthma
    later in childhood. Thus, one attractive idea is to decrease the
    prevalence of allergies by eliminating exposure to allergens during
    infancy. NIAID recently funded a Demonstration and Education Research
    Project that will evaluate the effectiveness of a program for the
    primary prevention of asthma based on allergen avoidance in very early
    childhood. In addition, a continuation of the National Cooperative
    Inner-City Asthma Study (1996-2000) was recently funded by NIAID and
    the National Institute for Environmental Health Sciences. This multi-
    site study will evaluate the effectiveness of a comprehensive
    environmental intervention designed to reduce or eliminate indoor
    allergen exposure among inner-city children. This study will measure
    the amount of improvement in moderate to severe asthma that can be
    achieved by allergy control.
        Other research is focusing on the cloning and molecular
    characterization of allergens and on the identification of previously
    unsuspected allergens that may contribute to asthma. Another important
    area of research involves manipulation of the immune system so that
    patients will have a reduced ability to mount allergic responses to
    allergens. Recent advances in basic research are suggesting some
    promising new methods for manipulating immune responses. Thus, further
    research may result in even more effective ways to control allergies
    and thereby treat asthma.
                       adverse effects of antihistamines
        Question. Dr. Fauci, I understand that allergies and subsequently
    the antihistamines that are prescribed have a significant impact on the
    performance of our nation's workforce, as well as on children's
    learning. Has your Institute researched the effect of allergies and
    antihistamines on children's learning?
        Answer. NIAID research is not focused specifically on the
    relationship between allergies or antihistamine use and learning,
    cognitive abilities, or performance. However, data on cognitive ability
    were collected in the NIAID-supported National Cooperative Inner-City
    Asthma Study. A correlation between asthma severity and cognitive
    ability was not found among the 4-9 year old children enrolled in this
    study.
        An estimated 15 million Americans suffer from asthma, 25 million
    from allergic rhinitis and approximately 35 million from sinus disease.
    Collectively, these diseases are responsible for millions of restricted
    activity days, missed days from school and work, significantly impaired
    quality of life, and impairments in cognitive function and learning
    ability. Antihistamines are the first line therapy for mild allergic
    rhinitis and are useful in certain forms of sinusitis. However, the
    most commonly used antihistamines cause a variety of adverse effects,
    including sedation, unrecognized drowsiness, impaired office and
    assembly line skills, impaired driving ability, impaired learning, and
    worsening in response times and performance to visual stimuli.
    Fortunately, newer, non-sedating antihistamines--which were introduced
    in the mid-1980s--penetrate poorly into the brain and generally lack
    these adverse effects. Indeed, the performance of allergic patients
    treated with non-sedating antihistamines is similar to the performance
    of non-allergic patients.
                                   marijuana
        Question. Dr. Leshner, the California and Arizona referenda
    favoring the use of marijuana in certain medical conditions points out
    how frustrated people can be when they feel they are not getting the
    right facts about marijuana as a medical therapy. The New England
    Journal of Medicine recently endorsed the use of marijuana in certain
    limited instances in patients with a chronic, perhaps, moribund
    condition, who have not responded to standard pain therapy. Your
    Institute recently held a National Conference on Marijuana Use:
    Prevention, Treatment, and Research. What were the findings of this
    meeting?
        Answer. The National Conference on Marijuana Use: Prevention,
    Treatment, and Research, was sponsored by the National Institute on
    Drug Abuse in collaboration with the Center for Substance Abuse
    Prevention and the Center for Substance Abuse Treatment, SAMHSA, in
    July 1995. The purpose of the conference was to provide scientifically
    based information on marijuana; to dispel commonly held myths
    surrounding marijuana use; to increase public awareness of the rising
    trends in marijuana use; and to educate the public about the
    consequences of marijuana use, especially for young people. This
    conference did not address issues of therapeutic uses of marijuana. A
    report of Conference Highlights is attached.
        More recently, the NIH sponsored a workshop in February 1997 to see
    what research has been done on the medical utility of marijuana, to
    identify what scientific questions remain to be answered, to consider
    what diseases or conditions might have potential for medical marijuana
    and to consider what special issues have to be considered in conducting
    such research. This workshop was truly a trans-NIH event involving 10
    of the NIH Institutes and Centers. A consultant review group is now
    considering the information presented at the workshop and will provide
    a report of its findings shortly to the NIH Director, to assist him in
    determining what actions NIH could take to fund needed research.
        In addition, recognizing the dearth of scientific information on
    the medical utility of marijuana, the Director of the Office of
    National Drug Control Policy has committed funds for a comprehensive
    18-month public review by the National Academy of Science's Institute
    of Medicine, of all scientific evidence on therapeutic marijuana.
                            medical use of marijuana
        Question. What is the view of research to date on the proposition
    that marijuana should not be approved for therapeutic use because there
    are other equally effective therapeutics that do not have the
    psychoactive effects of marijuana?
        Answer. The Food and Drug Administration (FDA) is the Federal
    agency charged with the review and approval of drugs for the treatment
    of disease states. The role of the NIH is to conduct biomedical
    research.
        The use of any substance for medical purposes, including marijuana,
    should be based on the scientific evidence. There are numerous
    instances (e.g., morphine for pain; amphetamine for weight loss;
    cocaine for local anesthesia) where illegal drugs are approved for
    medical uses. NIH welcomes applications for well-designed scientific
    studies to determine the safety and efficacy of marijuana for medical
    purposes. Well-designed clinical studies provide the findings to inform
    the scientific process whereby decisions regarding drug approval are
    made. The evaluation of marijuana for safety and efficacy for various
    medical conditions can and should be subject to this rigorous
    scientific process.
        Sound research findings to support anecdotal claims of the
    therapeutic benefits of smoked marijuana are currently lacking.
    Recognizing the dearth of scientific information, the National
    Institutes of Health (NIH) recently organized a scientific workshop to
    see what research has been done, identify what scientific questions
    remain to be answered, consider what diseases or conditions might have
    potential for medical marijuana and what special issues have to be
    considered in conducting such research. A consultant review group is
    considering the information presented at the workshop and will provide
    a report shortly to assist me in determining what actions NIH could
    take to fund needed research.
        It is important to note that there is scientific evidence regarding
    adverse health effects of smoked marijuana. It contains many of the
    same carcinogens and irritants found in tobacco and it produces
    profound changes in the brain and in behavior. Recent scientific
    findings have added to a growing body of evidence on the serious and
    harmful effects of marijuana, which many people mistakenly believe is a
    `safe' drug. In pre-clinical studies, for example, scientists have
    determined a link between activation of the biological receptors that
    respond to cannabinoids, the psychoactive ingredients in marijuana, and
    abrupt interruption of pregnancy at a very early stage. Recent research
    also shows that long term use of marijuana produces changes in the
    brain that are similar to those seen after long-term use of drugs such
    as cocaine, heroin, and alcohol.
        A synthetic form of marijuana's active ingredient, THC, is now
    available in capsule form and can be used for treating the nausea and
    vomiting that occur with certain cancer treatments. The oral THC also
    can be used to help AIDS patients eat more to keep their weight up as
    well.
                               basic neuroscience
        Question. Dr. Hyman, you have spoken considerably about your desire
    to increase basic neuroscience research at the NIMH. Would you further
    describe how you are moving forward in these areas?
        Answer. Understanding the biology of the brain, and how specific
    biological processes in the brain go awry, is key to understanding the
    causes of mental disorders such as schizophrenia and depression. NIMH
    is moving to increase basic neuroscience research in order to increase
    our knowledge of the roots of mental illnesses and how these illnesses
    may be prevented and treated. Research areas of particularly high
    priority at this time include:
        Developmental neuroscience.--This area holds the key to
    understanding how gene-environment interactions shape brain function
    and behavior. Basic conceptual issues concerning the development of
    many brain regions are poorly understood at present, especially for
    ``higher'' brain areas involved in cognition and the control of
    behavior, functions which go awry in some mental disorders.
        Molecular genetics.--Our increasing ability to manipulate the mouse
    genome has created remarkable new scientific opportunities to
    understand the development of the brain, brain function, and the
    genetics of behavior. Genetic technologies have progressed rapidly,
    permitting a rapid expansion of research. NIMH proposes to expand
    research on molecular genetics, neurobiology, and behavior, using the
    mouse model as the most efficient, inexpensive, and rapid means of
    gaining information.
        Neurobiology of emotion and motivation.--When combined with genetic
    approaches, new research on the neurobiology of emotion and motivation
    will provide cornerstones for research on depression, mania, and
    anxiety disorders, and--of interest to NIDA, a potential collaborator--
    on addictive disorders.
        NIMH has been able to start planning to expand research in these
    areas because the NIH Director, recognizing the importance of this
    work, dedicated some funds in the budget development process from the
    ``FY 1998 Areas of Emphasis'' initiative. In addition, within NIMH, I
    have undertaken to reorganize and streamline both the Institute's
    extramural and intramural research program staffs, with the objectives
    of better aligning our programmatic functions with the current
    directions of the neurosciences and behavior, and of bringing basic and
    clinical neurosciences closer together. As a key part of this
    reorganization, NIMH is currently recruiting a new Scientific Director,
    who will lead the reorganized intramural program.
                     clinical and health services research
        Question. Dr. Hyman, in this time of considerable change in our
    health care system, it is increasingly important that federal research
    programs assure the vitality of both clinical research and health
    services research. Would you outline the plans of the Institute to
    address these two important areas of research?
        Answer. Both clinical and health services research have been areas
    of major emphasis for the NIMH and will continue to be important in the
    future. In the field of health services research we have supported a
    wide variety of grants that address the organization and financing of
    health services for people with mental disorders. These studies have
    shown us new models of how to organize our mental health services to
    ensure that they provide the services needed by people with mental
    disorders in a variety of settings. In addition, this research has been
    instrumental in providing data on the cost of a variety of options for
    financing mental health care for adults and children. A recent report
    by the NIMH Advisory Council, in response to a Senate request, has
    provided data on the feasibility of providing parity coverage for
    mental disorders. Research from our mental health services portfolio
    has shown us how managed care impacts on the quality of services
    delivered and ways to improve the quality of those services. The NIMH
    intends to continue to support our broad portfolio in health services
    research with particular attention to understanding how the rapidly
    changing health care market, especially managed care arrangements,
    impacts on the provision of quality mental health services.
        NIMH sponsored research in clinical treatments has been important
    in the development of new and better treatments for a variety of mental
    disorders. This is highlighted in response to a question concerning
    NIMH clinical treatment research below. In addition, NIMH intends to
    expand its research portfolio to ensure that its clinical treatments
    have relevance to the diverse people who suffer from mental disorders.
    The Institute intends to reorganize the extramural science Divisions to
    bring the clinical treatment and services research portfolios together.
    We intend to put special emphasis on research that interfaces these two
    areas of science. The intent of this is to ensure that our treatments
    will be applicable to broad populations with a variety of disorders.
    Also, findings from studies that interface these areas should help us
    in the formulation of treatment interventions that are cost-effective
    and high quality.
                             schizophrenia research
        Question. Dr. Hyman, I am advised that funding for schizophrenia
    research as a percentage of the overall NIMH budget has declined
    somewhat over the last few years. Given the severity of this illness,
    what accounts for this change?
        Answer. Following the development and implementation in 1985 of the
    National Plan for Schizophrenia Research, NIMH-funded research relevant
    to schizophrenia--that is, epidemiologic, services and neuroscience
    research, as well as clinical and treatment studies, conducted both in
    our Intramural Research Program and through grants--increased some 250
    percent over a six-year period, raising our annual investment in
    schizophrenia to approximately $100 million. In more recent years,
    although NIMH's overall research funding has experienced a substantial
    slowing in the rate of growth that was commonplace through 1980s and
    early 1990s, we are maintaining funding for schizophrenia research in
    the $110 million range. While the infusion of funds called for by the
    National Plan invigorated the field and raised our scientific
    investment in this disease to a more appropriate level, the National
    Plan-inspired rate of growth could not be maintained indefinitely
    without severely impeding our capability to respond to opportunities in
    other critical areas, particularly areas of fundamental science that
    are essential to our understanding of schizophrenia. Thus, while the
    Institute is maintaining its real-dollar investment, schizophrenia
    research as a percentage of total NIMH research funding has declined
    from 19 percent, 4 years ago, to about 17 percent today. However, the
    success rate for research grant applications relevant to schizophrenia
    is somewhat higher than the Institute overall success rate; also,
    schizophrenia applications are paid to a higher percentile. Both of
    these measures signal the continuing priority we attach to
    schizophrenia research.
        NIMH staff now are in the process of analyzing our portfolio with
    respect to research focused directly on schizophrenia as well as basic
    neuroscience and behavioral science that is relevant to schizophrenia.
    For example, one of the most exciting areas of research is the
    hypothesis that schizophrenia is a neurodevelopmental disorder that has
    roots both in the formation of the brain in utero and in the neuronal
    changes that occur early in life, through adolescence and young
    adulthood. I am committed to supporting schizophrenia research by
    increases in absolute amount of funds--that is, over our current
    investment. I am committed as well to improving the already high
    quality of the research that we currently fund and expanding into areas
    which are currently under funded. The opportunities are certainly
    there. As new ``atypical'' antipsychotic medications come on the market
    after completion of industry-sponsored Phase III trials--a massive
    private sector investment, incidentally, that has been stimulated by
    our research funding over the years--we anticipate a significant number
    of investigator-initiated applications for research on these compounds
    to examine their use, dosage strategies, and comparative efficacy. In
    addition, we are seeing increasing activity in molecular genetics,
    particularly for complex disorders such as schizophrenia, as the power
    of this research approach is demonstrated in studies of simpler genetic
    disorders. NIMH now is providing to the field DNA samples contributed
    by families who have worked with investigators in our Diagnostic
    Centers Cooperative Agreement project. Also, I believe that outcomes
    research studying the effects of schizophrenia treatments in actual
    practice settings has been under funded in recent years, and I plan to
    rectify that.
                        treatments for mental illnesses
        Question. Dr. Hyman, Congress has become increasingly concerned
    that there be adequate support for clinical research. What progress has
    been made in research on treatments for mental illness, what still
    needs to be done, and what steps is the Institute taking to ensure
    there is adequate support for clinical research?
        Answer. Clinical treatment research continues to be a major
    emphasis of NIMH. We support a broad range of pharmacologic,
    psychosocial, and combined treatment strategies in all of the primary
    categories of mental illness: schizophrenia, major depression, bipolar
    disorder, and anxiety disorders. Recent studies with new ``atypical''
    antipsychotic medications promise a reduction of the primary symptoms
    of schizophrenia (thought disorder, hallucinations, and paranoia)
    without causing the sometimes debilitating impairment in cognition and
    motor function that often occurs with the older antipsychotic
    medications. Other ongoing research suggests that natural substances
    such as the amino acid, glycine, may be used in conjunction with
    traditional antipsychotic medications to further reduce symptoms of the
    disorder while at the same time reducing their side effects.
        Studies in bipolar disorder include newer mood stabilizers for
    treating acute episode and preventing relapses and recurrences. There
    is also an ongoing multi-site clinical trial of the antihypertensive
    drug verapamil, a calcium channel blocker antihypertensive medication,
    that has shown some preliminary evidence of efficacy as a mood
    stabilizer, without the sedation and kidney toxicity of current
    treatments for bipolar disorder. This study is being conducted with
    women of child-bearing potential because an added benefit of this
    medication is its apparent safe use during pregnancy.
        Future directions for clinical research will include greater
    emphasis on effectiveness studies (those that more closely approximate
    real world use)--for example, treatment of mental disorders in
    individuals with comorbid illness or substance abuse. Testable
    strategies for prevention of mental disorders or of reducing their
    progress are also being developed. Additional effort is directed at
    combined pharmacologic and psychosocial interventions in mood and
    anxiety disorders, including Institute support for a new training
    program in this specialized area of treatment research.
               research on child and adolescent mental disorders
        Question. Dr. Hyman, what can you tell the Committee about mental
    illness in children and adolescents and what is the NIMH doing to
    better understand pediatric disorders?
        Answer. Senator, through NIMH research we now know that mental
    illnesses strike children and adolescents, not just adults. Indeed,
    most of our major mental illnesses begin in the child and adolescent
    years. Community-based studies indicate that up to 21 percent of our
    nation's youth may be affected by mental disorders that involve mild to
    severe levels of impairment. Unfortunately, even the most severe early
    onset conditions such as autism may go unrecognized until children
    reach school age. Similar difficulties are encountered in the
    recognition and treatment of other conditions, such as manic-depressive
    disorder and Attention Deficit Hyperactivity Disorder. Failure to
    recognize and treat mental disorders puts children at risk for
    additional problems such as substance abuse, since these children with
    unrecognized mental disorders are at a severe disadvantage for keeping
    pace with their peers, with potential lifelong consequences.
        Thus, to expand our efforts in developing effective identification
    and treatment services across multiple settings, NIMH is increasing its
    collaborative activities with other agencies, such as the
    Administration on Children, Youth, and Families, Head Start, the
    Department of Education, and the Center for Mental Health Services. In
    parallel, we are working proactively with the pharmaceutical industry
    and the Food and Drug Administration to increase the testing of
    psychoactive agents, in terms of their safety and efficacy in children
    and adolescents. This effort has a high priority, given the frequency
    of ``off-label'' prescribing for children and adolescents here in the
    United States. In the last 12 months alone, we have funded five new
    ``Research Units on Pediatric Psychopharmacology'' to address this
    urgent public health problem.
        To better address the underlying causes of a number of the major
    childhood mental illnesses, we have accelerated our efforts to examine
    developmental neurobiologic and genetic mechanisms likely to be
    implicated in these conditions. For example, with support from Dr.
    Varmus' fiscal year 1997 one percent transfer funds, we have recently
    expanded our efforts to detect the genes that convey susceptibility for
    autism.
        To ``get the word out'' to the Nation's health care systems,
    providers, and families, we are preparing a number of public health
    information initiatives that will reach many persons in need of our new
    information. For example, within the next year, we will host a
    Consensus Development Conference on the role of psycho stimulants in
    the treatment of Attention Deficit Hyperactivity Disorder. This
    conference will review all scientific data concerning the diagnosis
    itself, what is known about the efficacy of specific treatments, and
    make recommendations for clinical practitioners and policy makers.
                     gender differences in mental illnesses
        Question. Dr. Hyman, the Committee has noted in the past that some
    mental disorders, such as depression, seem to strike women more than
    men. What, if anything, do we know from research that may account for
    this?
        Answer. From NIMH epidemiologic research, we know that, overall,
    mental disorders affect approximately equal numbers of men and women.
    However, higher rates for affective and anxiety disorders are found
    among women; for example, major depression and dysthymia affect almost
    twice as many women as men. Also, of course, women are much more likely
    to suffer from eating disorders than men are. Among disorders in which
    there are similar prevalence rates for men and women, gender
    differences may be found in symptomatology, age of onset, course of
    illness, and response to treatment.
        Question. What steps has the Institute taken to ensure that
    questions of gender differences in mental health treatment are
    investigated?
        Answer. NIMH has been emphasizing research on these gender
    differences for a number of years now; however, the underlying
    biological reasons for the differences are complex and not yet well
    understood. Both hormonal and psychosocial influences are suspected and
    are being studied. Recent research by NIMH intramural scientists who
    were studying women with a particular type of depression, Menstrually
    Related Mood Disorder, has provided some of the first direct evidence
    of the regulation of both blood flow in specific regions of the brain
    and depressive symptoms by hormones associated with the menstrual
    cycle. This research also suggests that differential sensitivities to
    these steroidal hormones, rather than differences in hormone levels,
    underlie those mood disorders that are associated with the menstrual
    cycle. These studies open up very important directions for future
    research.
        NIMH attaches high priority to research on gender differences in
    mental disorders and is actively working to stimulate basic, clinical,
    preventive, epidemiologic, and services research in this area. Two
    Program Announcements directed to women's mental health studies have
    been issued or expanded and updated: PA-95-061, Women's Mental Health
    Research, and PA-96-064, Mental Health Research in Eating Disorders.
    NIMH has also organized research workshops on women's mental health and
    has participated in women's health research workshops and conferences
    organized by the NIH Office of Research on Women's Health--activities
    designed to stimulate research.
       extramural facilities construction--centers ofemerging excellence
        Question. Dr. Vaitukaitis, during the last several years the
    Committee has provided funding for the extramural facilities
    construction program in which 25 percent of the funding is reserved for
    Institutions of Emerging Excellence. Would you please advise the
    Committee what progress has occurred to fulfill this requirement?
        Answer. Since the inception of the extramural facilities
    construction program, there has been only one year in which the NCRR
    was unable to utilize 25 percent of the appropriated funds for Centers
    of Emerging Excellence. In fiscal year 1995 there were no highly
    meritorious applications received from these institutions. However, in
    every other year, these institutions have received at least 25 percent
    of the funds appropriated for this purpose; in fiscal year 1996,
    Centers of Emerging Excellence received 29 percent of extramural
    facilities construction funds. We expect and intend to award at least
    25 percent of appropriated extramural construction funds to these
    institutions in fiscal year 1997. The quality of applications from
    these institutions has been steadily improving, and they are fully
    competitive with other institutions applying for the program.
                 violation of the ban on human embryo research
        Question. Dr. Collins, the Chicago Tribune published a story on
    March 9 stating that a scientist receiving funds from NIH violated the
    legislative ban on human embryo research by concealing his real
    activities at Georgetown University and Suburban Hospital. It was
    reported that with these funds, he ran an embryo testing laboratory and
    committed a diagnostic error that apparently resulted in the birth of
    an infant with cystic fibrosis. These allegations are troubling because
    they imply that those who wish to evade the intent of Congress and the
    President could do so. If it were not for the actions by some of his
    employees who reported his activities to authorities, he would still be
    conducting this type of research. Dr. Collins, what actions did you
    take and what actions will the Department take to investigate these
    allegations?
        Answer. In August and September 1996, when it became apparent that
    a problem might exist regarding Dr. Mark Hughes, through equipment
    inventory discrepancies at Georgetown University (GU) and statements of
    National Human Genome Research Institute (NHGRI), formerly NCHGR,
    employees, explanations were sought from Dr. Hughes. On September 23,
    1996, Dr. Jeffrey Trent, the Scientific Director of NHGRI, and I met
    with Dr. Hughes to remind him that it was imperative that he comply
    with NIH policy not to perform pre-implantation genetics research. Dr.
    Hughes assured us at that meeting that no Federal resources were being
    used in that endeavor. He admitted that he had moved equipment loaned
    to GU to Suburban Hospital, despite NHGRI insistence that no resources
    be used at Suburban, but said that he had recently moved the equipment
    back to GU. In September and October, Dr. Kate Berg, the Deputy
    Scientific Director of NHGRI, interviewed all personnel working under
    the direction of Dr. Hughes and determined that Dr. Hughes was using
    both NHGRI equipment and trainees to perform pre-implantation genetic
    diagnosis.
        On October 10, 11, and 15, Dr. Berg sent letters to all of the
    personnel working under the direction of Dr. Hughes to clarify the NIH
    policy on human embryo research. On October 17, 1996, Drs. Trent and
    Berg sent a memorandum to the HHS Office of the General Counsel and NIH
    Office of Human Resources Management documenting their findings
    regarding Dr. Hughes' activities. As a result, NHGRI was advised to
    terminate its research relationship with Dr. Hughes. NIH terminated its
    research relationship with Dr. Hughes (verbally and in writing) on
    October 21, 1996 at a meeting attended by Drs. Hughes, Trent, Berg, and
    me.
        Continuing efforts to collect information and reconcile equipment
    lists followed, and in January 1997 a conference call with the Regional
    Inspector General for Investigations, Philadelphia Field Office, and
    the NIH Deputy Director for Management was placed to refer this case.
    On January 27, 1997 the NIH Office of Management Assessment met with
    the NIH Deputy Director for Intramural Research and the NIH Office of
    Human Subjects Research (OHSR) to determine the next steps in
    coordinating with the Office of the Inspector General, HHS. From March
    6 to April 21, 1997, the OHSR conducted a review of activities related
    to Dr. Hughes and determined that the research conducted by Dr. Hughes
    should have been subjected to review by an Institutional Review Board.
        Question. If it were possible for this individual to evade this ban
    for a significant period of time, how confident can you be about those
    who might conceal efforts at cloning human beings?
        Answer. We are confident that this was an isolated incident. Dr.
    Hughes clearly was aware of the rules and purposely set out to evade
    them. The NIH's review of the activities related to the violation of
    the ban on embryo research by Dr. Hughes resulted in the identification
    of several management areas needing immediate and future enhancement to
    ensure that such incidents do not happen in the future.
        The NIH already has policies and procedures in place in each of
    these areas and the follow-up actions taken or planned will supplement
    the existing requirement with revised new requirements or will involve
    further testing or review to assure that existing controls and
    procedures are working as intended. The actions are:
        1. Assure that intramural staff and extramural grantees are
    officially advised of legislatively imposed conditions on research,
    once such conditions are enacted.
        2. Assure that NIH trainees are properly mentored and are advised
    of rules regarding research and what steps to take when problems arise
    in carrying out their research responsibilities.
        3. Assure timely communication of information to the Office of the
    Inspector General and the Director of the NIH, when violation of law or
    significant deviation from the NIH policy may have occurred.
        The following chart identifies the actions NIH has taken to date
    and the further actions planned for each of these areas of concern.

                                  NIH FOLLOW-UP TO ADDRESS MANAGEMENT OVERSIGHT ISSUES
    ----------------------------------------------------------------------------------------------------------------
            Management concerns                   Action taken to date                 Further actions planned
    ----------------------------------------------------------------------------------------------------------------
    1. Assure that all NIH staff and     1. The Deputy Director for Intramural  1. The Office of Legislative Policy
     extramural grantees are advised of   Research (DDIR) issued a memorandum    and Analysis (OLPA) will advise the
     legislatively imposed conditions     to all NIH intramural scientific       Director, ICD Directors, and NIH
     on research.                         staff reminding them of the            senior management in writing of all
                                          continuing prohibition against         legislative provisions in
                                          conducting human embryo research at    appropriations acts within 5 days
                                          NIH. (Feb. 4, 1997).                   of enactment. (This is already done
                                         2. NIH posted a list of the             for authorizing statutes).
                                          legislative mandates contained in     2. NIH (OLPA) is preparing a manual
                                          Public Law 104-208 on the NIH home     chapter on legislative
                                          page. (Feb. 97).                       implementation plans which
                                         3. The ASMB/HHS issued a letter to      identifies specific NIH
                                          Institutional officials of             organizations accountable for
                                          universities reminding them that no    implementing and monitoring
                                          Federal research funds may be used     compliance with mandates in
                                          for the creation of a human embryo     appropriation laws. Plans will
                                          for research or for research in        identify mechanisms for information
                                          which a human embryo is destroyed,     dissemination to intramural staff
                                          discarded, or subject to more than     and grantees, as needed. (Already
                                          minimal risk. (Feb. 97).               complete for authorizing statutes.)
                                         4. The Office of Extramural Research   3. Communication of important
                                          (OER) distributed the ASMB's letter    Administration, Secretarial, and
                                          to over 1700 officials. (Feb. 97).     NIH policies (non-legislative) will
                                         5. OER discussed the need to ensure     occur more vigorously at NIH ICD
                                          compliance with the human embryo       Directors', Executive Officers',
                                          research ban at a meeting of the       and Scientific Directors' meetings.
                                          Extramural Program Management         4. The DDIR is preparing a new
                                          Committee. (Feb. 97).                  publication clearance form for use
                                         6. The NHGRI Scientific Director: (1)   by all Scientific Directors to
                                          met with each NHGRI principal          assure increased oversight over
                                          investigator (tenured or tenure-       publishable work done in the
                                          track scientist) to describe the       intramural program. The NHGRI
                                          importance of compliance with human    Scientific Director is developing
                                          subject regulations and publication    criteria to provide increased
                                          clearance issues and (2) attended      oversight/review/clearance over
                                          the individual lab meetings of each    scientific articles,including
                                          principal investigator (at which       abstracts by its scientists.
                                          attendance was mandatory) to present
                                          to every research member of every
                                          NHGRI laboratory the critical nature
                                          of human subjects compliance and
                                          publication clearance. (March 97).
                                         7. NHGRI's Scientific Director
                                          discusses priority research
                                          oversight topics at weekly meetings
                                          with NHGRI lab and Branch Chiefs
                                          including protocol procedures,
                                          publication approvals, and outside
                                          activities, as well as research
                                          administration oversight activities
                                          including property, space and
                                          facilities, contracting, and
                                          personnel. (Ongoing since 1993).
    2. Assure that NIH trainees are      1. Established a requirement for all   1. Continue development of a central
     properly mentored and are advised    NIH intramural staff to take a new     database of all intramural
     of rules regarding research and      computer-based human subjects          scientists (including post-doctoral
     what steps to take when problems     research training program. (96-97).    fellows and students) at the NIH
     arise in carrying out their         2. Under the direction of the Deputy    which will include a description of
     research responsibilities.           Director for Intramural Research,      the work being done by the
                                          the NIH Ethics and Conduct Committee   scientist. This database will be
                                          has developed programs to improve      fully text searchable and will
                                          mentoring and to encourage post-       enable identification of all
                                          doctoral fellows to seek help if       research activities which might
                                          problems arise. One of these           require follow-up, which will be
                                          improvements is a pilot project to     the responsibility of the Deputy
                                          appoint an ombudsman to address        Director for Intramural Research.
                                          concerns of laboratory researchers    2. Complete development and begin
                                          at the NIH. The appointment has been   implementation for all staff,
                                          made, and the ombudsman will report    including IPAs, of an NIH-wide
                                          to the Deputy Director, NIH. (March    orientation package which will be
                                          and June 97).                          tailored to the area in which the
                                                                                 employee works and will cover areas
                                                                                 of human studies, research,
                                                                                 technology transfer, safety in the
                                                                                 laboratory, and to whom to express
                                                                                 concerns aboutresearch-related or
                                                                                 personnel problems.
                                                                                3. Preparation of succinct, clearly
                                                                                 written guides covering rules/
                                                                                 regulations and responsibilities
                                                                                 for post-doctoral fellows and a
                                                                                 ``Primer for Scientific
                                                                                 Directors.''
                                                                                4. NHGRI will hold quarterly, or as
                                                                                 needed, meetings with trainees and
                                                                                 new Principal Investigators to
                                                                                 provide an opportunity for feedback
                                                                                 on the science and work experience
                                                                                 in NHGRI's intramural program.
                                                                                5. An evaluation of the
                                                                                 effectiveness of the ombudsman
                                                                                 concept will be carried out after
                                                                                 one year.
    3. Assure timely communication of    1. The OIG Hotline Tips Handbook was   1. The DDM will report alleged
     information when suspected/alleged   distributed to all senior staff and    violations of law or policy as
     violations of law or significant     ICD Directors and Executive            necessary, but no less than
     deviations from NIH policy may       Officers. (Jan. 97).                   monthly, to the Director and Deputy
     have occurred to the:               2. Senior staff and ICD Directors       Director, NIH.
      -- Director, NIH                    have been reminded that they need to  2. ICD Directors, Executive
      -- Office of Inspector General      report violations to the OIG or OMA    Officers, and OD Senior Staff will
                                          and keep the Director informed.        be reminded to advise the Director,
                                          (Feb. 97).                             Deputy Director, NIH, and the
                                         3. NIH staff at all levels have been    Deputy Director for Management of
                                          reminded, through placement of a       violations in their areas of
                                          notice on the NIH home page and by     responsibility on a timely basis.
                                          desk-to-desk distribution of a
                                          memorandum from the Director, NIH,
                                          to report suspected violations of
                                          law or administrative policy to the
                                          Director, OMA or the OIG Hotline.
                                          Staff were reminded to report
                                          possible criminal violations
                                          immediately. (Feb. 97).
                                         4. A new NIH manual chapter on
                                          procedures for reporting allegations
                                          of criminal offenses, misuse of NIH
                                          grant and contract funds, or
                                          improper conduct by NIH employees
                                          has been issued desk-to-desk to all
                                          NIH employees. Electronic
                                          announcement of the chapter and OMA
                                          and OIG Hotline telephone numbers
                                          have been provided to all NIH staff.
                                          Staff were reminded to report
                                          allegations of criminal activity
                                          immediately. (June 97).
    ----------------------------------------------------------------------------------------------------------------

                   upholding the integrity of scientific data

        Question. Dr. Collins, the disclosure last fall that an
    assistant of yours confessed to a series of data
    misrepresentations and outright fabrications was very
    disturbing. What steps did you take to correct the fraudulent
    data and will you take to ensure the future integrity of
    scientific data?
        Answer. In the Fall of 1996, I confirmed that a serious
    case of fabrication and falsification of data had occurred in
    my laboratory, involving a project on the mechanism of
    leukemogenesis. No patients were directly involved in the
    research. This situation first came to light when a careful
    reviewer noted that a figure in a manuscript submitted for
    publication appeared to have been altered. I instituted a
    review of the experimental efforts of the suspected individual,
    Mr. Amitav Hajra, who was no longer affiliated with the NIH
    laboratory. Analysis of the laboratory notebooks, photographs,
    x-ray files, and the student's Ph.D. dissertation uncovered
    additional examples where the authenticity of data could not be
    verified. When the individual was confronted about these
    discrepancies, he confessed to a series of data
    misrepresentations and outright fabrications, extending over a
    period of at least two years.
        Once discovered, the necessary steps were immediately taken
    to report and investigate this case. Scientists working in the
    field were notified and retractions of all flawed manuscripts
    were submitted and have now been published. The DHHS Office of
    Research Integrity (ORI) and the University of Michigan, from
    which this student had come, were notified and a full and
    formal investigation has been completed. The ORI found that Mr.
    Hajra engaged in scientific misconduct by falsifying and
    fabricating research data in five published research papers,
    two published review articles, one submitted but unpublished
    paper, in his doctoral dissertation, and in a submission to the
    GenBank computer data base. Mr. Hajra has accepted the ORI
    finding and has entered into a Voluntary Exclusion Agreement
    with ORI in which he has voluntarily agreed, for the four (4)
    year period beginning July 7, 1997, to exclude himself from:
        (1) Contracting or subcontracting with any agency of the
    United States Government and from eligibility for, or
    involvement in, nonprocurement transactions (e.g., grants and
    cooperative agreements) of the United States Government as
    defined in 45 CFR Part 76 (Debarment Regulations);
        (2) Serving in any advisory capacity to the Public Health
    Service (PHS), including but not limited to service on any PHS
    advisory committee, board, and/or peer review committee, or as
    a consultant.
        To uncover such a blatant example of fabrication of data,
    carried out by a student of apparent great intrinsic talent,
    and who discussed his results and shared his data frequently
    with me and numerous other members of the laboratory, has been
    a deeply disturbing experience. I have gone out of my way to
    speak freely about the experience, feeling that such episodes
    of scientific misconduct, while fortunately rare, provide
    lessons for everyone. I and many other researchers who were
    affected by these events, have increased our own vigilance as a
    consequence. A ground breaking course on ethical behavior is
    now required of all intramural trainees at NHGRI. However, it
    is unlikely that any system will be fool proof. Fortunately, it
    is an inherent property of the scientific enterprise that it is
    self-correcting--important experimental results will always be
    verified by others as they build on these results to produce
    further new knowledge.

                 next generation internet medical applications

        Question. Dr. Lindberg, as both Director of the NLM and
    former Director of the White House National Coordination Office
    for High Performance Computing and Communications, can you tell
    us a bit about medicine's role in the HPCC initiative and the
    Next Generation Internet program?
        Answer. Medicine can benefit from and contribute to high
    performance computing and communication systems and
    applications requiring high speed network connections.
    Applications such as the analysis of biomolecular sequences and
    structures, the processing and visualization of biomedical
    images, the development of networks linking hospitals, clinics,
    libraries, and medical schools, the development of computerized
    patient records and telemedicine technologies, and the creation
    of virtual environments to assist in medical diagnosis are
    currently being tested and show great promise of improving the
    delivery of health services.
        Next Generation Internet applications fall into the
    categories of advanced telemedicine, telehealth and distance
    learning or control applications. They would generally require
    the transfer of many gigabits of data in close to real time
    such as CT, MRI or PET scan studies. Other applications require
    the transfer of smaller amounts of data but with considerations
    such as very tight control of latency and/or jitter such as
    echocardiography, angiography, nystagmus gait analysis and
    functional MRI. Still other applications require the retrieval
    of multimedia reference data from libraries. The availability
    of the Next Generation Internet will lead to a whole new set of
    applications, telepresence applications, which are based on the
    ability to control, feel and manipulate devices at a distance.
    Applications already being developed include remote microscopy
    for pathology, remote monitoring and control of devices for
    home health care. Eventually, these advances may even lead to
    telesurgery. All health care applications have a strong
    security and confidentiality component.

                       world wide web--health information

        Question. Dr. Lindberg, the general public in great numbers
    are turning to the World Wide Web as a source of information to
    improve their own health. What is NLM doing to provide quality
    health information to consumers and what improvements could be
    made?
        Answer. The Library recently announced that health
    professionals and the general public have free access to
    MEDLINE using the World Wide Web via PubMed or Internet
    Grateful Med. MEDLINE is the Library's premier database,
    containing citations to articles in about 3,900 biomedical and
    health care journals from all over the world. This is the
    database used by members of the general public to retrieve
    information which has been very helpful in treating a medical
    condition they or a member of their family had. Staff are
    working to identify some high quality journals specifically
    designed for consumers to add to MEDLINE in 1998. Other
    databases created by the Library, such as AIDSLINE and
    HealthSTAR, a database of citations to health care research and
    technology assessment reports, are or will also be accessible
    free via the Web.
        The National Library of Medicine's home page links to the
    full text of documents, including HIV/AIDS resources; consumer
    brochures of clinical practice guidelines sponsored by the
    Agency for Health Care Policy and Research and treatment
    protocols; NIH Clinical Alerts; early releases of clinical
    information from NIH; and a number of hot links to Web-based
    sources of excellent health information from NIH, DHHS's
    healthfinder, CDC's prevention guidelines, etc. The Library is
    also beginning a pilot project to determine the requirements
    for an ongoing project to locate, bibliographically describe,
    monitor, and make available in a database Web sites containing
    information of particular value to consumers.
                                    ------

                     Questions Submitted by Senator Gorton

              extramural research facilities construction program

        Question. The status of equipment and core facilities
    available to support research can best be described as
    ``fraying at the edges''. The matching grants program which
    assisted universities in maintaining cutting edge facilities
    was an important program particularly for those research
    centers that are co-located with public hospitals and deal with
    trauma, infectious disease, and severe mental illness and/or
    substance abuse. If Congress succeeds in appropriating
    additional funds for the NIH, do you have plans to direct some
    of these funds towards this program?
        Answer. The extramural research facilities construction
    program, administered by the National Center for Research
    Resources, supports highly meritorious projects which will
    enhance the research capacity of the nation's research
    institutions. In the past, awards have been made to
    institutions to enhance research capability in many areas,
    including trauma, infectious disease, mental illness and
    substance abuse. The study of the nation's research facilities
    by the National Science Foundation in 1996 found that the space
    available for research in this country is diminishing and
    deteriorating. Therefore, this could be one of NIH's priorities
    for using additional funds.

                    streamlining and reinvention initiatives

        Question. What are the results of streamlining efforts such
    as GPRA? How do you propose to keep from ``growing back'' to
    the levels of bureaucratic spending?
        Answer. As a part of efforts such as the Government
    Performance and Results Act (GPRA), the NIH has initiated
    streamlining and reinvention initiatives. NIH has four major
    goals for reinvention: (1) maximize scientific opportunities
    through optimal use of resources; (2) enhance NIH interactions
    with the scientific community; (3) clarify and streamline
    decision-making processes; and (4) focus internal operations on
    outcomes and results. Examples of completed streamlining
    efforts include:
        Streamlined Review.--Based on the original NIH application
    ``triage'' process, streamlined review procedures insure that
    there is a review and critique of each application while
    allowing the review process to focus on those applications that
    are most competitive. Adding to the efficiency of this process,
    reviewers' critiques are transmitted verbatim, thus preserving
    the detail, substance, and complexity of the issues being
    addressed. This results in savings in staff time previously
    spent on editing reviewers' comments.
        Streamlined Noncompeting Award Process (SNAP).--Under SNAP,
    the majority of noncompetitive continuation applicants are not
    required to submit certain application components if there are
    no significant changes to previously submitted data. SNAP has
    eliminated nonessential reporting of data which saves time for
    applicants as well as NIH staff. Following the success of the
    original SNAP, NIH followed with a Phase II in which
    requirements related to the Notice of Grant Award were reduced,
    and a Phase III was initiated to modify the financial reporting
    requirements. These have further increased efficiency.
        Electronic requests for research contracts.--A number of
    NIH institutes have begun to post Requests for Contract
    Proposals (RFPs) on the NIH Gopher server. This provides
    savings in the costs of mailing and copying, and in contract
    staff effort.
        The following are examples of current streamlining
    initiatives that are being pilot-tested. These streamlining
    activities build on previous efforts and are expected to
    relieve administrative burdens on both NIH staff and grantee
    organizations.
        Electronic Data Interchange (EDI).--Under a Cooperative
    Agreement with the Department of Energy (DOE), the NIH and
    several Department of Defense (DOD) agencies are participating
    in a pilot study to test a new system for the submission of
    grant application information. This initiative is reducing the
    need for manual re-keying of data and duplicative paper
    processing of key grant administrative information.
        Electronic Streamlined Noncompeting Award Process (E-
    SNAP).--An electronic version of the SNAP process is now being
    pilot tested. ``E-SNAP'' is an interactive World Wide Web based
    site for electronic submission of SNAP information. Using the
    interface, authorized grantees will submit all required
    information electronically. This initiative will save staff
    time and reduce mailing and copying costs incurred by paper
    transmission of data.
        Paperless Acquisition.--A pilot test is being conducted to
    test the feasibility of ``paperless'' acquisition of research
    contract proposals. This ``paperless'' system is expected to
    reduce the time and expense of all parties involved in the
    acquisition process.
        Expedited Review and Award.--A pilot test is being
    conducted that will streamline five features of the
    application-to-award process. Although the initial pilot test
    is limited to a single initial review group and a single
    awarding institute, the eventual results will likely streamline
    aspects of the receipt, referral, review, and award processes
    for all NIH applications.
        NIH staff are continually working to identify ways to
    improve how we do business. We maintain an open dialogue with
    the extramural community and seek new ideas about streamlining
    and related activities. The feedback we have received about
    these efforts has been positive and we plan to build on past
    successes and continue to implement changes in policies and
    procedures that will improve our efficiency and effectiveness.
                                    ------

                      Questions Submitted by Senator Byrd

                        alcohol research budget request

        Question. According to the National Institute on Alcohol
    Abuse and Alcoholism (NIAAA), alcohol abuse and alcoholism cost
    our nation approximately $100 billion annually. While the
    current crusade abut the dangers of smoking tobacco and the war
    on drugs are certainly important and worthwhile endeavors, I am
    concerned that the impact that the consumption of alcoholic
    beverages has on our nation and on our youth is receiving short
    shrift. Given the enormous toll that alcohol exacts on our
    nation, do you feel that the President's fiscal year 1998
    budget request of $208,112,000 for NIAAA is adequate?
        Answer. The fiscal year 1998 President's Budget requested
    an increase of approximately $7.5 million over the fiscal year
    1997 appropriation to enable the Institute to sustain its
    research progress, address the most significant research
    opportunities and support high quality research grants in
    priority areas such as genetics, fetal alcohol syndrome,
    neuroscience, medications development, prevention, and
    treatment.

                        alcohol advertising and children

        Question. Has the NIAAA explored the impact of alcohol
    advertising on our nation's children?
        Answer. The Institute has supported research which explores
    the impact of alcohol advertising on our nation's children. The
    current research findings on alcohol advertising and youth
    suggest that alcohol advertising may influence adolescents'
    drinking beliefs and expectancies but, at this point, research
    has not established the final link between alcohol advertising
    and adolescent alcohol consumption.
        Question. Do the findings, if any, warrant further study in
    working toward the Institute's goal of combating alcohol abuse
    and alcoholism?
        Answer. Current research findings are inconclusive and the
    Institute is interested in obtaining more decisive evidence on
    the impact of alcohol advertising specifically addressing
    concerns about the initiation, use, and misuse of alcohol by
    youths and other vulnerable populations. A NIAAA program
    announcement continues to solicit applications to elucidate the
    connection between advertising, mass media portrayals and
    alcohol use and abuse by youthful and vulnerable populations
    and expects additional fiscal year 1998 research grant
    applications in this priority area.
                                    ------

                      Questions Submitted by Senator Kohl

                              nih budget increase

        Question. There's been a lot of talk about doubling the $13
    billion NIH budget. I also support boosting our nation's
    biomedical research investment. Unfortunately, the Senate
    rejected an amendment to the budget that would have provided a
    down payment toward that goal, even though it was fully offset
    by an across-the-board reduction in administrative costs from
    other federal agencies.
        Now we are faced with trying to fulfill promises of a big
    increase when this Subcommittee is faced with a health budget
    that is $100 million below a freeze from current funding
    levels. Therefore, any increase in NIH would potentially have
    to come at the expense of other public health or education
    programs, which, I am sure you would agree, is not a good
    choice.
        Are there further reductions in NIH overhead or
    administrative costs that you are prepared to offer to help in
    this task? Do you have other suggestions for offsets?
        Answer. In an effort to provide a better understanding of
    administrative cost allocations, the NIH is currently
    responding to a study requested by Mr. Porter, Chairman of the
    House Subcommittee on Labor, HHS, and Education appropriations.
    This study will advise the NIH on management improvement issues
    and it will help to improve service levels and to reduce costs.
    The study will focus on identifying best practices and
    opportunities to create administrative efficiencies. Other
    reinvention efforts are underway in the organizations
    responsible for awarding NIH grants and contracts, and we are
    continuing our efforts to review each Institute's intramural
    research program for effectiveness and efficiency, as well as
    best scientific practices.

                                early child care

        Question. I am very supportive of the research conducted by
    the National Institute of Child Health and Human Development on
    the impact of child care on child development. This research
    has shown that higher child care quality was consistently
    related to better outcomes in cognitive and language
    development in the first three year's of life. Just in case
    there was any doubt, I believe this research provides a clear
    justification for increasing our investment in quality child
    care, particularly for the zero-to-three age group. Did this
    research examine on-site child care arrangements provided by
    businesses for their workers?
        Answer. The NICHD Study of Early Child Care selected for
    its investigation 1,364 newborn infants and their families from
    among the 8,986 infants whose mothers were contacted soon after
    giving birth. The infants were observed in the child care
    settings that their parents selected for them. These settings
    included relative care, in home non- relative care, child care
    homes and center care. Parents were asked if the care setting
    was a for-profit setting or not, and if it was non-profit,
    parents were asked if the setting was sponsored by a
    corporation, business, hospital or employer. Only a small
    proportion of non-profit settings fell into this general
    category of sponsorship. The settings which were sponsored were
    child care centers. However, when the children were very young
    the number of children in centers was small. The number
    increased as children matured. When the infants were 6 months,
    19 of the 91 child care centers that provided care for study
    children were ``sponsored''. At 15 months, 6 of the 70 child
    care centers were sponsored. At 24 months, 5 out of the 91
    centers were sponsored, at 36 months, 12 of the 219 centers
    were sponsored and at 54 months only 19 of the 652 centers
    providing care for study children fell into the ``sponsored''
    category.
        Question. How will these studies help families and
    businesses deal with the critical need for high quality child
    care?
        Answer. The findings from the NICHD Study of Early Child
    Care show that after controlling family characteristics
    (including the quality of mothers' interaction with their
    children), child care quality is associated with positive
    outcomes for children. The higher the quality of positive
    caregiving and language stimulation by child care providers,
    the better the cognitive and language development of the
    children at 15 months of age, at two and at three years of age.
    With quality of care controlled, being enrolled in child care
    centers contributed further to better cognitive and language
    outcomes, probably because child care centers are more oriented
    than other child care arrangements to preparing children for
    school.
        These findings suggest that parents can influence the
    development of their children not only by the way they interact
    with their children but also by the quality of the non-maternal
    care they select for them. Businesses which offer child care
    for children of their employees can help parents and children
    by providing high quality of care. High quality care is focused
    on providing each child with sensitive, responsive and
    cognitively enriching child care.

     research utilizing experiences of community and migrant health centers

        Question. Community and migrant health centers fulfill an
    important role in our health care system by providing
    comprehensive care to those who are most at risk in our
    society--those who, because of race, income, language or
    cultural barriers, may have severely limited access to health
    care services. Faced with severe budget constraints, these
    centers provide creative public health strategies to help
    people who are otherwise excluded from out health care system.
    As such, there are unique opportunities to utilize community
    and migrant health centers for various public health research
    objectives. What percentage of the NIH budget is directed
    towards research that incorporates the experiences of community
    and migrant health centers? How can NIH, and NIEHS in
    particular, expand research protocols that include these
    centers?
        Answer. The NIH values the unique perspectives that
    community and migrant health centers provide in health
    research. We continue to build partnerships with these centers.
    In fiscal year 1996, approximately 2 percent of the NIH
    extramural budget was directed toward research involving these
    centers. Research involving community and migrant health
    centers would be part of the support for clinical research,
    approximately 36 percent of the extramural budget.
        The NIH will develop strategies to assist researchers in
    their outreach to communities as a step toward building
    partnerships and increasing collaborative participation in
    research. The NIH has already identified a number of successful
    approaches for involving communities and migrant health centers
    in research. For example, through the National Black Leadership
    Initiative on Cancer, the NIH has reached out to minorities on
    cancer treatment in the Minority-Based Community Cancer
    Oncology Program. Additional examples include a community-
    based, public health oriented program to increase physical
    activity of older adults and community programs for clinical
    research on AIDS.
        NIEHS has a number of specific programs that utilize
    community and migrant health centers in accomplishing their
    research objectives. Within the NIEHS Centers program, Centers
    located at the University of Iowa and the University of
    California, Davis, specifically target environmental health
    problems of migrant farmworkers and interact with local health
    centers to help alleviate adverse health impacts. NIEHS-
    supported Developmental Centers at Columbia, Tulane, and the
    University of Louisville also utilize the resources of local
    health centers to address environmental health problems of
    socioeconomically disadvantaged and medically underserved
    populations in their vicinity.
        In addition, NIEHS supports a grant program in Community-
    Based Prevention/ Intervention Research that has the specific
    aim of developing culturally appropriate intervention
    strategies based on a partnership among scientists, health care
    providers, and community members. Two of these projects focus
    on pesticide-related health problems among migrant farmworkers
    in North Carolina and Oregon. Others address lead poisoning and
    outdoor/indoor air pollution and asthma in both children and
    adults in urban as well as rural settings. All of these
    projects are community-based and therefore collaborate
    extensively with local health centers and clinics.
        Through its Environmental Justice grant program, NIEHS
    supports additional projects involving partnerships among
    researchers, clinicians, and residents. These projects seek to
    increase the community's awareness about environmental health
    issues and to enhance their input into the decision-making
    process that develops future research and intervention
    approaches to address their concerns. One project concentrates
    on migrant farmworker health problems on the Texas-Mexico
    border. Others deal with a diverse array of hazardous exposures
    and underserved populations, including Native, African, Asian,
    and Hispanic Americans. Again, because of the specific
    community-based nature of this initiative, the twelve grants
    within this program all make significant use of local health
    centers and clinics.
        Question. Does the Administration support extending the ban
    on federal funding for human embryo research in the fiscal year
    1998 Labor, HHS and Education Appropriations bill?
        Answer. As indicated in the President's fiscal year 1998
    budget, the Administration does not believe it is necessary to
    address this issue in legislation and does not support doing
    so. In December 1994 the President took administrative action
    to ban the use of federal funds to create embryos for research
    purposes, stating, ``I do not believe that federal funds should
    be used to support the creation of human embryos for research
    purposes, and I have directed that NIH not allocate any
    resources for such research.''

                             conclusion of hearings

        Senator Specter. Thank you all for being here and that
    concludes our hearings, the subcommittee will stand in recess
    subject to the call of the Chair.
        [Whereupon, at 4:05 p.m., Wednesday, June 11, the hearings
    were concluded, and the subcommittee was recessed, to reconvene
    subject to the call of the Chair.]

             Material Submitted Subsequent to Conclusion of Hearing

        [Clerk's note.--The following statements were received
    subsequent to conclusion of the hearing. The statements will be
    inserted into the record at this point.]

    Prepared Statement of Dr. Enoch Gordis, Director, National Institute on
                      Alcohol Abuse and Alcoholism [NIAAA]

        I am pleased to be here with you today to discuss the many
    scientific advances and research opportunities at the National
    Institute on Alcohol Abuse and Alcoholism (NIAAA). The NIAAA is
    the foremost Federal agency supporting biomedical and
    behavioral research directed towards improving the prevention
    and treatment of alcohol abuse and alcoholism and reducing
    associated health, economic, and social consequences. NIAAA
    funds 90 percent of all alcohol research in the United States
    and provides leadership in the country's effort to combat these
    problems by developing new knowledge that will decrease the
    incidence and prevalence of alcohol abuse and alcoholism, and
    its associated morbidity and mortality.
        Alcoholism research has the potential to impact on the
    lives of approximately 14 million alcoholics, alcohol abusers
    and their families--an estimated 98 million Americans. Although
    a dollar figure cannot adequately reflect the social and human
    devastation caused by these illnesses, it is estimated that the
    economic and health care costs to society from alcoholism and
    alcohol abuse approach $100 billion annually \1\. Research
    findings that improve the prevention or treatment of alcohol
    abuse and alcoholism have tremendous potential for affecting
    the quality of life of nearly every American and can influence
    thinking in other areas of medicine.
    ---------------------------------------------------------------------------
        \1\ Rice, Dorothy, P., The Economic Cost of Alcohol Abuse and
    Alcohol Dependence: 1990. Alcohol Health and Research World 17(1):10-
    11, 1993
    ---------------------------------------------------------------------------
        Among the areas where alcoholism research has made
    significant strides is the demonstration that a significant
    amount of the vulnerability to alcoholism is inherited.
    Previous twin and adoption studies laid the foundation for
    current genetics work, much by individual NIAAA intramural
    scientists but most extensively in the Collaborative Study on
    the Genetics of Alcoholism (COGA) supported by NIAAA. COGA is a
    multi-site collaborative, tightly controlled study of large
    families who have alcoholism multiply represented among their
    members. COGA involves six extramural research study centers in
    which investigators are searching the entire human genome for
    genetic markers linked with alcoholism.
        COGA scientists developed accurate, valid, reliable, and
    specific comprehensive interviewing tools, the Semi-Structured
    Assessment for the Genetics of Alcoholism (SSAGA) and its
    companion version for children (C-SSAGA-C) and adolescents (C-
    SSAGA-A). These new interviewing tools represent a major
    advance in currently available interviewing techniques, and are
    in use internationally. Resources subsequently developed by
    COGA include diagnostic and pedigree data on 3,000 individuals
    belonging to about 300 families with alcoholism, along with
    corresponding biochemical, genetic, and neurophysiological
    data. Also developed is a collection of DNA samples and
    immortalized cell lines derived from these individuals and
    maintained in a Cell Repository. COGA resources will thus
    provide a wealth of data available to the scientific community
    for further investigation.
        We are very pleased to report that initial COGA findings
    have identified promising chromosomal locations relating to
    alcoholism, and colloquially referred to as ``hot spots.''
    Distinct from this research is the finding of chromosomal
    locations for a specific brain wave pattern, P3, found in
    persons at high risk for alcoholism. Each chromosomal location
    contains many genes and the next task is to identify the
    precise genes. The payoff for this research is the development
    of new medications, targeted prevention programs, and a precise
    understanding of both the genetic and environmental influences
    on the development of alcoholism.
        Another area where alcohol research has advanced is in the
    use of animal models for studying complex behavior, such as,
    alcohol consumption. Molecular biology techniques are being
    used to identify quantitative trait loci (QTL) which give
    investigators the ability to define the contribution of single
    genes, any of which together create the quantitative trait. We
    are pleased to report that an NIAAA-sponsored investigator has
    located two sex-specific genes influencing alcohol consumption
    in mice. One QTL (Alcp1) is active only in males; the other
    (Alcp2) is active only in females, and only when inherited
    through the maternal lineage. Because of similarities between
    the mouse and human genes, this work promises to accelerate
    locating human genes that contribute to alcoholism.
        Earlier work led to the conclusion that the
    neurotransmitter, serotonin, is involved in alcohol
    consumption. Recently, a study identified one precise serotonin
    receptor subtype, 5-HT1B, that is involved in regulating the
    consumption of alcohol in mice. This was accomplished by
    genetically removing the serotonin receptor, 5-HT1B, and
    observing increases in alcohol consumption. Stimulation of the
    5-HT1A serotonin receptor subtype, however, reduces
    consumption. Other investigators showed that clinically
    realistic doses of alcohol affect several neurotransmitters
    including, NMDA subtype of glutamate receptor, the GABAA
    receptor, and other serotonin receptors. The effect of alcohol
    on these receptors varies among brain locations in single
    animals and between strains raised to demonstrate major
    differences in alcohol related behaviors.
        Advances are also being made in understanding the mechanism
    of alcohol-induced tissue damage (toxicology). These findings
    include: the fact that alcohol can influence the expression of
    cytokine-regulated genes in the liver; that clinical management
    of alcohol-induced liver injury might be improved by reducing
    the number of gram-negative bacteria producing endotoxin in the
    intestine; and that the pathogenesis of fibrosis in alcoholic
    liver damage may involve the direct deposition of collagen
    induced by acetaldehyde, the first product of alcohol
    metabolism.
        Advances are also beginning to unravel the mechanisms of
    alcohol's effects on human fetal development leading to the
    manifestations of fetal alcohol syndrome (FAS). Two findings
    suggest reasonable mechanisms for alcohol's effects on the
    fetus. One finding is that alcohol induces excessive cell death
    through the formation of free radicals in pre-migratory neural
    crest cells resulting in subsequent malformation. The addition
    of a free-radical scavenger can ameliorate alcohol-induced cell
    death. The second finding is that at clinically relevant
    levels, alcohol completely inhibits the activity of the L1 cell
    adhesion molecule which helps guide newly forming neural cells
    to their proper location.
        Research on effective medications is built upon findings
    such as those previously mentioned. Naltrexone, nalmefene, and
    acamprosate are among the most promising medications. The use
    of naltrexone which was recently approved by the FDA for the
    treatment of alcoholism is based on clinical and basic science
    observations. NIAAA-sponsored clinical trials are now
    determining which groups of patients are most responsive to
    this medication and the benefits and side effects of long-term
    use. Nalmefene, another opioid antagonist, also appears
    promising and has several potential advantages over naltrexone
    including a longer half-life, enhanced bioavailability, less
    liver toxicity, and more complete blockage of opioid receptors.
    Acamprosate, now under an FDA investigational new drug
    protocol, has been tested in clinical studies throughout Europe
    with promising results. It appears to act on NMDA and GABA
    receptors. NIAAA is providing consultation on methodology and
    trial design to pharmaceutical companies planning clinical
    trials on acamprosate.
        In addition to medications development, other aspects of
    treatment research are also advancing rapidly. We are ready to
    begin advanced clinical trials built upon data obtained from
    both medication studies and from the recently completed multi-
    site treatment trial, called Project MATCH. This study compared
    the effects of different treatment types when matched to
    specific patient characteristics and was the largest, most
    complex randomized clinical trial ever undertaken in alcoholism
    treatment. A number of alternative treatments for alcohol
    problems are available. They range from brief, motivational
    interventions to ``broad spectrum'' treatments, such as social
    skills training, and the 12-step ``Minnesota model.''
    Frequently two or more treatment types are combined in one
    therapeutic approach.
        Based upon the literature and previous small studies, the
    hypothesis was advanced that matching patient characteristics
    to specific treatment modalities would be the most efficacious.
    Patients were randomly assigned to well-specified treatment
    strategies. Subsequently the relationship between treatment
    outcome, patient characteristics, and treatment type were
    assessed. A total of 1728 patients were recruited from nine
    states, with ample representation of women (25 percent) and
    minorities (20 percent). Three specific, well-defined, and
    well-controlled treatment approaches were tested. The findings
    from MATCH, however, did not confirm this expectation.
        Instead, the three treatments achieved comparable outcomes
    and the data indicate that each treatment type resulted in
    substantial reductions in drinking. Furthermore, this reduction
    in drinking was generally sustained for 12 months. With the
    exception of patients with serious psychiatric problems, it
    appears that matching patient characteristics to a specific
    treatment type did not improve outcome. This study demonstrates
    that well-designed treatments, in combination with good
    training of therapists, contribute to excellent retention rates
    in treatment. Furthermore, these findings run counter to the
    belief that treatment gains are inconsequential and short-
    lived.
        The next major step is to build upon the findings from
    Project MATCH and the randomized trials for medication, such as
    those previously reported for naltrexone. The major goal is to
    combine MATCH with new insights gained from medications
    research. Follow-up clinical trials will include new
    pharmacotherapies, such as naltrexone, nalmefene, and
    acamprosate, combined with standardized behavioral strategies.
    In sum, we expect findings from genetics research,
    neuroscience, and medications development to inform the
    development of increasingly improved treatment strategies.
        Prevention research is also a priority at NIAAA, the goal
    of which is to obtain scientifically objective and measurable
    effects attributable to specific interventions. To ensure the
    acquisition of meaningful results, these studies employ
    rigorously defined scientific methodologies including random
    selection and control communities. One excellent example is a
    recent study nearing completion which may provide a model
    alcohol use prevention program that can be implemented in
    communities around the country. The Northland study used a
    multi-component, multi-year, community trial to delay, prevent,
    and reduce the prevalence of alcohol use and alcohol-related
    problems among a group of adolescents from 22 school districts
    in northeastern Minnesota. The project targets the Class of
    1998 and has been ongoing for five years, beginning with
    students in the sixth grade and following them through grade
    10. Interim results look quite hopeful. At the end of three
    years of program (grade 8) the rates of alcohol use were
    significantly lower among students in the program school
    districts compared to the reference districts. When compared to
    reference districts, 19 percent fewer students who received the
    program used alcohol in the past month, and past week use was
    29 percent lower. Of great significance is the fact that
    overall fewer students initiated alcohol use. For instance,
    past month alcohol use by 8th graders who did not drink in
    grade 6 was 28 percent lower in program communities than in
    reference communities.
        In addition, NIAAA is taking a leading role in educating
    the public and physicians about alcoholism. Our Alcohol, Health
    and Research World is an award winning journal and information
    about nearly all of NIAAA's activities are available on our web
    site, including grant and funding information. This past year
    we published and disseminated 75,000 copies of The Physicians'
    Guide to Helping Patients with Alcohol Problems. At the request
    of the Office of National Drug Control Policy (ONDCP), an
    additional 165,000 copies were printed for distribution by
    ONDCP. DuPont Pharma is also significantly aiding in this
    effort at their own expense by printing and distributing
    through their field representatives an additional 60,000 copies
    to primary care physicians nationwide.
        In conclusion, alcohol research is progressing rapidly and
    the scientific advances and opportunities in our field are very
    encouraging. Mr. Chairman, the fiscal year 1998 President's
    budget request for the National Institute on Alcohol Abuse and
    Alcoholism is $208,112,000. Thank you. I will be happy to
    answer any questions the committee may have.
                                    ------

                    Biographical Sketch of Dr. Enoch Gordis

        Enoch Gordis, M.D., became the Director of the National
    Institute on Alcohol Abuse and Alcoholism (NIAAA) in October
    1986. Prior to this, he was Professor of Clinical Medicine at
    Mt. Sinai School of Medicine, New York City, and a staff member
    of the Elmhurst Hospital in Elmhurst, N.Y., where he founded
    and directed the hospital's alcoholism program from 1971 until
    his appointment to NIAAA. This large comprehensive program,
    with both inpatient and outpatient components, served some
    15,000 patients during his tenure.
        The NIAAA, a part of the U.S. Department of Health and
    Human Services' (HHS) National Institutes of Health (NIH), is
    the principal Federal agency for research on the causes,
    consequences, treatment, and prevention, of alcohol-related
    problems. Through an intramural scientific program, which
    includes a 14-bed clinical research facility on the National
    Institutes of Health (NIH) Bethesda, Maryland Campus, and
    through an extensive array of extramural research grants and
    contracts, NIAAA supports studies in a variety of biological
    and behavioral areas such as, neurosciences, pharmacology,
    epidemiology, genetics, molecular biology, and prevention and
    treatment. The Institute also supports research training and
    health professions development programs, and research on
    alcohol-related public policies that provide HHS and other
    Federal, State, and local government decisionmakers with state-
    of-the-art analyses of the relationships between public
    policies and alcohol-related problems. The current NIAAA budget
    is $212 million.
        Dr. Gordis trained in internal medicine at the Mount Sinai
    Hospital in New York. During this period, he also was a
    research fellow in Dr. Solomon Berson's laboratory at the Bronx
    Veterans Administration hospital. Following his residency, Dr.
    Gordis spent 10 years at New York City's Rockefeller University
    in the laboratory of Dr. Vincent Dole, conducting research in
    the areas of lipid metabolism, toxicology of carbon
    tetrachloride, analytical biochemistry of drug stereoisomers,
    the metabolism of alcohol and alcohol withdrawal. He has
    published on the clinical evaluation of alcoholism treatment,
    biological markers of drinking, disulfiram therapy, and the
    relationship between science and social policy.
        As NIAAA Director, Dr. Gordis' principal goal is to
    continue support for activities designed to give maximum
    visibility to the Institute's role as a leader in alcohol-
    related research and the integral part of that role in
    preventing and treating alcohol abuse and alcoholism. This will
    include continued support for NIAAA's extramural and intramural
    research programs; support for a continuing Institute role in
    health professional education; increased attention to public
    policy research; and enhanced data collection and dissemination
    activities.
        A member of Phi Beta Kappa, Dr. Gordis received his B.A.
    degree from Columbia University in 1950 and M.D. degree from
    the Columbia College of Physicians and Surgeons in 1954. He is
    a member of the American Physiological Society, the American
    Federation for Clinical Research, Sigma Xi, the American
    Gastroenterological Association, the American Society of
    Addiction.
                                    ------

        Prepared Statement of Dr. Patricia A. Grady, Director, National
                      Institute of Nursing Research [NINR]

        Mr. Chairman, it is a pleasure to be here today to describe
    for you NINR-supported research that demonstrates the relevance
    and rich variety of our research endeavors. I also look forward
    to discussing our current and planned activities for fiscal
    year 1998. The Nation's investment in health research has
    resulted in improved health for our citizens. However, many
    more questions remain to be answered. This is particularly true
    when we look at the implications of changing demographic trends
    on the health of our Nation. The Nation's population is
    shifting to the upper decades of life. With longer lives, we
    can expect an increase in chronic illnesses, which will require
    longer and more costly health care. The demand for innovation
    through nursing research discoveries has never been greater.
        Nursing research is an emerging science that adds a vital
    and necessary perspective to the conduct of research. Although
    the search for cures continues, research on improved care is a
    parallel necessity. Nursing research focuses on the patient in
    the pursuit of answers. This, in turn, can lead to basic
    laboratory studies or clinical research, as well as to research
    on prevention of disease and promotion of healthy life choices.
        To demonstrate the contributions of nursing research, I
    would like to begin my discussion of research funded by the
    Institute by highlighting a health concern that we have all
    felt--pain. Pain generates nearly 40 million visits to health
    care providers, can prolong hospital stays, and may impede
    recovery. Pain research is complicated, because while we all
    share a basic common physiology, we do not react to pain the
    same way.
        Recent findings from an NINR-supported study on pain have
    generated national, scientific and media attention. In
    addressing the influence on pain of a variety of factors, such
    as age and ethnicity, NINR-supported researchers focused on the
    role of gender--the first such study--to determine if women and
    men respond differently to painkillers. When completed, the
    study showed that women could obtain pain relief, with fewer
    side effects, from commercially available but seldom used
    painkillers known as kappa-opioids, such as nalbuphine or
    butorphanol. Men, however, were not so fortunate. They received
    little benefit from the drugs. Kappa-opioids were tested on
    young men and women who had their wisdom teeth removed which,
    as many of us know, produces moderate to severe pain. Although
    kappa-opioids are in use to ease women's labor pains, they are
    not generally in use for other pain reduction. Earlier clinical
    testing, primarily on men, found these same painkillers
    ineffective. Consequently, morphine-like opioids are typically
    used because they are effective in both men and women. However,
    they can have the undesirable side effects of nausea and
    disorientation. The recent findings present further questions
    about effective management of pain. For example, we need to
    understand better the role of hormones on the perception of
    pain. How do estrogen or testosterone mediate pain? Do women
    have more kappa receptors on certain nerve cells than men, thus
    enabling kappa-opioids to block pain better? Another question
    is are there gender differences in the way the brain regulates
    pain relief? Clearly, this continues to be an important area of
    research, with many yet unanswered questions about better pain
    management for everyone.
        With regard to another health problem, one that affects 10
    to 15 percent of Americans and two or three times more women
    than men, nursing researchers have made important advances in
    understanding the mysteriously caused, unpleasant
    gastrointestinal symptoms known as irritable bowel syndrome, or
    IBS. This disorder accounts for more than two million medical
    prescriptions, 3.5 million physician visits, and 34,000
    hospitalizations each year. Existing research suggests IBS may
    result from heightened arousal of the sympathetic nervous
    system, which governs the involuntary activities of internal
    organs, including the intestines. With the goal of preventing
    and treating IBS, NINR-supported investigators studied three
    neuroendocrine markers--norepinephrine, epinephrine, and
    cortisol--which indicate levels of sympathetic nervous system
    activity. Three groups of women were studied, including a group
    of patients diagnosed with IBS. Scientists found this group to
    have significantly higher norepinephrine levels in the evening
    and morning, and higher epinephrine and cortisol levels
    generally. Not unexpectedly, the patient group reported higher
    levels of stress, the only consistent variable that accounted
    for higher arousal of the sympathetic nervous system. As a next
    step, researchers will be designing screening programs to
    distinguish between behavioral and physiological causes of IBS.
    The results of this research will also have important
    implications for cost effective therapies. Currently, IBS is
    diagnosed very indirectly--through a process of eliminating
    other causes. How many doctors visits could be avoided, with
    what savings to the health care system, if a positive diagnosis
    were possible based on scientific methods?
        Although cardiovascular disease is decreasing, it is still
    the number one killer of more than 950,000 Americans each year,
    and accounts for at least $2 billion in Medicare expenditures.
    Those who live with the disease may undergo invasive
    therapeutic procedures, such as angioplasty or bypass
    operations. Extensive lifestyle changes are usually required to
    preserve health. The roots of cardiovascular disease often go
    back to childhood, and risks intensify as age increases.
    Interventions early in life are key to achieving a healthy
    adulthood. Nursing investigators have designed and tested an 8-
    week intervention to reduce cardiovascular risk factors in more
    than 2,200 third and fourth grade school youngsters in rural
    and urban areas, almost 20 percent of whom were African-
    American. By the study's end, students showed reductions in
    total cholesterol levels, body mass index, and body fat. The
    children also showed increased physical endurance. This
    intervention is being expanded to 1,600 middle school students,
    26 percent of whom are African-American. The focus of this
    study will be on those living in rural areas.
        Threaded throughout NINR's research portfolio is a
    responsiveness to ethnic and cultural diversity. As we learned
    from important findings on the effect of gender in pain, health
    care models need to address the requirements of diverse
    populations to be effective and ensure improved health
    outcomes. From the research perspective, questionnaires and
    health assessments written only in English exclude many non-
    English-speaking subjects from health research. Consequently,
    ethnically and culturally diverse groups miss the opportunity
    to participate in protocols, and research findings will not
    adequately address their health needs. To deal with this issue,
    NINR-supported researchers adapted an English language
    Arthritis Self-Management Program for Hispanic patients with
    arthritis. Hispanics represent about 9 percent of the U.S.
    population. About 20 percent are unable to speak English well,
    and about 11 percent are affected with arthritis and other
    rheumatic conditions. Seven health assessment scales were
    translated into Spanish and incorporated into questionnaires
    answered by Hispanic subjects about various aspects of their
    health. Findings indicate that the reliability and validity of
    the scales were not compromised in the translation process, and
    were appropriate for a variety of Spanish speakers of different
    national origins and regions.
        The research I have briefly described today is but a sample
    of NINR's research portfolio. The vitality of research,
    however, stems from the many questions that still remain to be
    answered. Therefore, I would like to discuss briefly several
    research emphases for the fiscal year ahead: symptom management
    for chronic neurological conditions; managing traumatic brain
    injury; improving quality of life for transplantation patients;
    and attending to end-of-life care issues.
        Two out of three Americans seek treatment in any given year
    for problems involving the brain or nervous system at
    tremendous cost to the health care system. The NINR will
    continue to support research dealing with symptoms typically
    associated with such neurological disorders as stroke,
    epilepsy, Parkinson's disease, and spinal cord injury. Symptoms
    include problems with mobility, pain, sleep and depression. We
    also seek to identify factors related to successful family
    caregiving, both from patient and caregiver perspectives.
    Collaborations addressing these issues will be sought with
    other NIH institutes and the Veteran's Administration.
        Another neurological issue, managing traumatic brain
    injury, also involves nursing researchers. Traumatic brain
    injury alone accounts for the hospitalization of 500,000 people
    each year. Two-thirds survive with impaired brain function, and
    another 5,000 develop epilepsy. Much of the damage that results
    from traumatic brain injury is caused not by the initial injury
    but by the cascade of biochemical events triggered by the
    injury. If untreated, brain tissue and cells are deprived of
    sufficient oxygen, leading to the formation of metabolic toxins
    that contribute to the progressive deterioration of the brain.
    NINR, in collaboration with a number of other NIH Institutes
    and Centers, is supporting the development of promising
    antiacidosis therapies to prevent this progression and its
    destructive sequelae. Last year, NINR reported success in
    neutralizing metabolic toxins using an antioxidant,
    deferoxamine, in an animal model. NINR will continue to
    investigate the role of antiacidosis therapies in protecting
    viable brain tissue as a treatment for head trauma. In order to
    focus attention on the prevention, treatment, and
    rehabilitative needs of children, NINR is cosponsoring an NIH
    consensus development conference on managing traumatic brain
    injury. A program announcement regarding research directions
    identified by this conference will be issued in fiscal year
    1998.
        Thanks to health research, twelve thousand Americans
    benefit from an organ transplant each year. Many of these
    patients, the majority of whom have received kidney
    transplants, have survived into their 50s and 60s, and are
    following long-term drug regimens, including steroid and
    immunosuppressive therapies. These regimens are not without
    side effects, such as osteoporosis, cancer, neurologic
    impairment, cardiac dysfunction and atherosclerosis. In seeking
    answers about management or prevention of these complications,
    the NINR is a partner with other institutes on an
    interdisciplinary NIH workgroup that will explore research
    opportunities aimed at improving the quality of life of long-
    term transplantation survivors.
        Complex issues associated with the end of life have been
    receiving considerable national attention. NINR funds studies
    of bioethical, biological and behavioral issues directly
    related to the end of life. For example, its research portfolio
    includes management of pain; family decisionmaking for patients
    who are incapacitated; and surveys of end of life medical and
    supportive practices. This year a workshop will be cosponsored
    by NINR and other NIH institutes to identify research needs in
    palliative care. NINR will also collaborate in issuing a
    program announcement in 1998 on end-of-life care, which will
    address four critical issues: 1) managing the transition to
    palliative care, 2) understanding and managing pain and other
    symptoms, such as nausea and depression, at the end of life, 3)
    measuring results, such as relief of symptoms, and 4)
    documenting costs for patients and family caregiving during
    end-stage illness.
        As NINR begins its second decade at the NIH, current and
    emerging research and societal issues intensify the need for
    the perspectives of nursing research. Clinically-based,
    patient-oriented nursing research is well positioned to make
    important contributions to improving health and quality of life
    for our citizens.
        Mr. Chairman, the fiscal year 1998 request for NINR is
    $55,692,000. I will be pleased to answer any questions you
    might have.
                                    ------

                    Biographical Sketch of Patricia A. Grady

        Dr. Patricia A. Grady was appointed Director, NINR, on
    April 3, 1995. She earned her undergraduate degree in nursing
    from Georgetown University in Washington, DC. She pursued her
    graduate education at the University of Maryland, receiving a
    master's degree from the School of Nursing and a doctorate in
    physiology from the School of Medicine.
        An internationally recognized stroke researcher, Dr.
    Grady's scientific focus has primarily been in stroke, with
    emphasis on arterial stenosis and cerebral ischemia. She is a
    member of several scientific organizations, including the
    Society for Neuroscience, the American Academy of Neurology,
    and The American Neurological Association. She is also a fellow
    of the American Heart Association Stroke Council.
        In 1988, Dr. Grady joined the NIH as an extramural research
    program administrator in the National Institute of Neurological
    Diseases and Stroke (NINDS) in the areas of stroke and brain
    imaging. Two years later, she served on the NIH Task Force for
    Medical Rehabilitation Research, which established the first
    long-range research agenda for the field of medical
    rehabilitation research. In 1992, she assumed the
    responsibilities of NINDS Assistant Director. From 1993 to
    1995, she was Deputy Director and Acting Director of NINDS.
    Recently Dr. Grady was appointed to the NIH Warren Grant
    Magnuson Clinical Center Board of Governors.
        Before coming to NIH, Dr. Grady held several academic
    positions and served concurrently on the faculties of the
    University of Maryland School of Nursing and School of
    Medicine.
                                    ------

      Prepared Statement of Dr. Judith L. Vaitukaitis, Director, National
                      Center for Research Resources [NCRR]

        Mr. Chairman and Members of the Committee: It is a pleasure
    to appear before you today to discuss the activities and
    accomplishments of the National Center for Research Resources.
    NCRR has a unique responsibility for biomedical research
    infrastructure at the National Institutes of Health. That
    infrastructure can be compared to a great locomotive that
    transports passengers--in this case scientists who explore
    disease and its remedies--toward ever-changing destinations.
    Investigators depend on NCRR to create, develop, and provide
    the ``engine'' or infrastructure of modern science to keep
    science moving forward.
        Infrastructure takes many forms--from sophisticated
    instrumentation and technologies, clinical research
    environments, and animal research models of human disease, to
    construction and human resource-building activities. Most of
    NCRR's budget supports center grants that underwrite research
    infrastructure at academic medical centers and universities
    throughout the nation. Those centers provide specially adapted
    facilities, instrumentation, and expertise to biomedical
    investigators on a local, regional or national basis. NCRR-
    supported research facilities and repositories serve more than
    10,000 investigators nationwide.
        Recent findings at NCRR-funded biomedical technology
    centers have great dollar-saving potential. For example, the
    first magnetic resonance images using hyperpolarized gas in
    living systems have been developed. This technology produces a
    signal 100 to 10,000 times more powerful than traditional MRI,
    with no added cost to the MRI system and only a moderate cost
    for polarized gas.
        NCRR is a key player in new drug discovery, design,
    development, and testing as well. For example, cytomegalovirus
    (CMV) infects up to 70 percent of the U.S. population and can
    cause life-threatening infections in immunosuppressed
    individuals. Scientists using an NCRR-funded biomedical
    technology resource at Cornell University have succeeded in
    visualizing the 3-D structure of cytomegalovirus' protease
    enzyme required for CMV replication, thereby providing a new
    target for antiviral drug design.
        In another study, scientists recently synthesized a peptide
    from the sea snail Conus magnus for use as a potential pain-
    reducing drug for cancer and AIDS patients. NCRR-supported
    Shared Instrumentation Grants played a prominent role in
    analyzing the toxins and an NCRR-supported mass spectrometry
    resource in San Diego characterized the structures of
    conotoxins. Clinical trials are underway at General Clinical
    Research Centers to assess the effectiveness of these potential
    pain-reducing drugs. With more than 500 species of sea snails,
    the Conus family has enormous potential for drug discovery.
        Clinical investigations at NCRR-supported General Clinical
    Research Centers and through the Clinical Research Initiative
    at several minority medical schools advance our knowledge of
    how to prevent, diagnose and treat serious health problems. For
    example, investigators at a Yale University GCRC used a
    noninvasive imaging technique, known as single photon emission
    computerized tomography, to provide additional proof that
    increased transmission of the neurotransmitter dopamine causes
    the symptoms of schizophrenia.
        Investigators at the University of Utah GCRC recently
    identified a gene that, with others, controls the regularity of
    a person's heartbeat. By detecting individuals who have a
    mutated form of this gene, physicians can prescribe medications
    that protect against cardiac arrhythmias, which cause a
    staggering death toll each year, even among young, apparently
    healthy people.
        A step toward better treatment of a deadly disease took
    place at a GCRC at the University of Connecticut. There,
    melanoma patients were immunized with cytolytic T lymphocytes
    (CTLs), an approach known to attack melanoma cells at the
    vaccination and distant tumor sites. In this study,
    investigators induced a peptide-specific CTL response against
    the melanoma.
        In fiscal year 1996, the network of GCRCs hosted 7,835
    investigators who carried out 5,604 research projects--both
    numbers are the greatest in the program's history. Many GCRC
    sites, where managed care has heavily penetrated, have become
    oases for patient-oriented research. For the same reason,
    several academic medical centers which currently do not have
    GCRCs are actively pursuing competing for a center for their
    faculty to conduct patient-oriented research.
        To address the health issues which disproportionately
    affect under served populations, NCRR launched the Clinical
    Research Initiative (CRI) within selected Research Centers in
    Minority Institutions (RCMI)-supported institutions to enhance
    their clinical research infrastructure. The RCMI program
    enhances the capacity of minority colleges and universities
    that offer doctorates in health or health-related sciences to
    conduct health-related research. The CRI provides the resources
    for patient-oriented research so that investigators at the RCMI
    sites can more effectively compete for NIH clinical research
    funding.
        Whether investigating cancer or an emerging infectious
    disease, researchers also need a wide range of animal and other
    models. Almost half of all NIH-funded
        grants include animal-based research. Often research is
    most effectively advanced by a combination of model systems
    rather than by reliance on only a few. Successful new research
    models include a rhesus monkey model for Lyme disease, as well
    as colonies of aged monkeys for investigations of the
    neurobiology and physiology of aging and Alzheimer's disease.
        Centralized shared resources for genetically-altered
    animals and other organisms are of great interest to the
    scientific community because they provide unique models with
    specific genetic defects with which to determine gene function.
    An economical research model is the zebrafish. This tiny
    creature will allow study of genetic defects that are
    comparable to genetic defects in humans. Best of all, this
    model is economical--the cost of supporting 1,700 zebrafish
    equals that of supporting 17 mice! NCRR supports a host of
    other genetic stock centers, including those for the fruit fly,
    yeast, and round worm as well as for induced mutant resources
    for mice.
        NCRR also supports human resource development through two
    science education programs. The Science Education Partnership
    Award (SEPA) program encourages scientists to work with
    educators and other organizations to improve student and public
    understanding of science and promote interest in scientific
    careers. For example, BrainLink, a SEPA project at Baylor
    College of Medicine, communicates the fun and excitement of
    ``doing'' science and promotes healthy behaviors for youngsters
    in elementary and middle schools. NCRR also supports a Minority
    Initiative for K-12 Teachers and High School Students. That
    program's purpose is to ensure that an adequate supply of
    under-represented groups enters the career pipeline for
    biomedical research and the health professions.
        A primary NCRR objective has been to promote accessibility
    to novel and essential research tools and to support cutting-
    edge technologies. Breakthroughs in basic engineering and
    physics can provide the research tools for health-based
    research. NCRR programs will continue to foster that transition
    in fiscal year 1998. For example, the NCRR will develop and
    coordinate a new initiative that will focus on understanding
    the structure and function of the brain and its dynamic changes
    with time, the fourth dimension. To attain these goals, further
    development of new imaging modalities as well as new tools for
    neurosimulation and modeling are needed. Studies of the brain
    microvasculature, mechanisms of cell death and studies to map
    concentrations of specific neurotransmitters in the brain will
    lead to improved knowledge about neurodegenerative diseases
    such as Parkinson's and Alzheimer's diseases.
        Another initiative will encourage development of innovative
    software, algorithms, and techniques for use with high
    performance computers and telecommunication facilities to
    increase the number of biomedical technology resources and
    their applications that can be remotely accessed by
    investigators across the country over the next generation of
    the Internet, which will be 1,000 times faster than the current
    Internet. Magnetic resonance imaging resources and other
    modeling resources, essential for structural biology, are
    candidates for this approach.
        Another initiative will extend development of gene vectors
    for human diseases through the National Gene Vector
    Laboratories. Gene vectors will be generated for a variety of
    diseases, including rheumatoid arthritis, immunologic
    disorders, vascular diseases, AIDS, metabolic diseases and
    cancers. The Regional Primate Research Centers (RPRCs) and the
    network of GCRCs will host studies designed to define
    innovative approaches to human gene therapy. In addition, both
    the GCRCs and RPRCs will host studies to define the molecular
    basis for disease.
        In conjunction with the regional primate research centers,
    investigators will focus on the development of novel vaccines
    for AIDS. Studies that may pave the way for developing vaccines
    against HIV in humans were recently reported by scientists at
    the NCRR-supported New England Regional Primate Research
    Center. Investigations with rhesus monkeys showed that vaccine
    protection against intravenous challenge with simian
    immunodeficiency virus (SIV), similar to its human counterpart,
    could be attained with live attenuated vaccine from which
    certain viral genes had been deleted. These and other related
    efforts will be extended to help identify an effective vaccine
    for HIV.
        In the future, as in the past, it is important for NCRR to
    set priorities and to anticipate investigators' needs to assure
    that appropriate research facilities and resources are in place
    when investigators need them. Accordingly, this year NCRR will
    update its strategic plan, first developed in 1994, and will
    again seek input from its many constituencies in the scientific
    community. Nearly all the actions recommended in the 1994 plan
    have been implemented.
        Continued improvement of research ``engines''--from
    technologies to clinical environments, research models,
    construction, and human resource development--will allow NCRR
    to pull many ``cars'' and ensure a cost-effective biomedical
    research enterprise that can meet both scientific and economic
    demands.
        Mr. Chairman, the fiscal year 1998 President's Budget
    Request for NCRR is $333,868,000. I would be pleased to answer
    any questions you may have.
                                    ------

    Prepared Statement of Dr. Philip E. Schambra, Director, John E. Fogarty
      International Center [FIC] for Advanced Study in the Health Sciences

        Mr. Chairman, it is my privilege to present the programs
    and accomplishments of the Fogarty International Center (FIC).
    Our namesake, John E. Fogarty, who served as Chairman of this
    subcommittee, is one of a continuing lineage of Congressional
    Representatives who have enabled NIH to become an international
    leader, not only in the quality of its research, but through
    cooperation with over 100 nations.
        FIC was established to improve health through international
    scientific cooperation. As we look toward a new century, health
    concerns are increasingly global in scope. Unexpected diseases
    have surfaced due to altered patterns of land use, the
    adaptability of disease pathogens, and other factors. With the
    ease and frequency of international travel, disease outbreaks
    in foreign countries can rapidly cross U.S. borders. This
    includes infectious diseases such as the Ebola virus, new
    variants of the AIDS virus, and dengue fever. Pollutants in the
    atmosphere, water, and food chain pose equally insidious risks,
    contributing to a host of chronic diseases and developmental
    disorders. The persistence of population growth in resource-
    poor nations threatens to undermine health gains by impeding
    economic growth. It is estimated that in the next 25 years,
    nearly three billion people will be added to the world's
    population. Ninety-five percent of this growth will occur in
    developing countries, where high birth rates already force
    subsistence farmers onto marginal land, into crowded urban
    areas, or across national borders. Such global demographic
    changes will lead to the emergence of new infectious diseases
    and increased human exposure to pollutants.
        Biomedical research is the foremost means of reversing
    these disturbing health trends through new medical technologies
    and prevention strategies. Through prevention research, it is
    conceivable that the developing world may be spared the burden
    of disability and death from diabetes, coronary heart disease,
    and hypertension that has plagued industrialized, urban
    societies. But these challenges cannot be met through research
    that is confined within our borders. What is urgently required
    are international partnerships that enable American scientists
    to train foreign colleagues and to work cooperatively in
    affected regions of the world. This is how the United States
    helped to eradicate smallpox globally, and virtually eliminate
    polio in this hemisphere. Ultimately, such cooperation will
    become the most effective armament against the new epidemics of
    infectious and chronic disease.
        FIC builds these partnerships through research training
    programs, small grants, individual fellowships and
    institutional alliances. Technical skills and knowledge are
    shared with scientists worldwide in such fields as
    epidemiology, immunology, microbiology, endocrinology, cell and
    molecular biology, toxicology, biochemistry and biostatistics.
    Cooperative studies are supported in regions of the world that,
    due to disease burdens or environmental conditions, provide
    unique opportunities to devise methods of treatment and
    prevention. For example, the development of certain vaccines
    may depend on international field trials. These include
    vaccines for HIV/AIDS, respiratory infections caused by
    pneumococcus, and diarrheal diseases caused by shigella and
    cholera.
        FIC's international partnerships are planned and conducted
    in cooperation with our sister institutes at NIH. In addition,
    FIC undertakes concerted efforts to bring new resources and
    scientific perspectives to global health through cooperation
    with other agencies of the Public Health Service and Federal
    Government. Almost sixty percent of the funds managed by FIC
    (including AIDS funding sanctioned by the OAR) come from other
    NIH or Federal components, who view FIC as a means of advancing
    their international goals. These intra-and interagency
    alliances also reduce administrative costs and streamline
    management requirements.
        The model for FIC's global health efforts is its AIDS
    International Training and Research Program, established by
    Congress in 1988 to provide training for scientists and health
    professionals from developing countries where HIV is a critical
    health concern. Since its inception, over 1000 scientists from
    over 80 countries have received training in the United States
    and now assist the U.S. in international prevention efforts.
    This past year, the program documented a substantial decrease
    in the prevalence of HIV in the population of one foreign
    country as a result of a systematic prevention strategy. Our
    long-range objective is to create these same partnerships to
    meet the challenge of emerging infectious diseases,
    environmental health and population growth. This would
    demonstrate a compelling leadership role for the United States
    in international health. The geopolitical, as well as
    scientific benefits of these linkages are significant. Many FIC
    trainees represent the future scientific leadership of their
    countries.
        During the past fiscal year, FIC launched the International
    Research and Training Program on New and Emerging Infectious
    Diseases. The purpose is to support cooperative research and
    training in regions of the world that are the potential origin
    of new epidemics, employing new molecular and analytic tools in
    their study. New knowledge is needed to develop a global
    research surveillance system capable of detecting and
    containing future epidemics. The program represents a
    partnership with the National Institute of Allergy and
    Infectious Diseases and The Centers for Disease Control and
    Prevention (CDC) in support of a Presidential Decision
    Directive and recommendations of the President's National
    Science and Technology Council. The useful role of this program
    already has been demonstrated in the case of the deadly Ebola
    virus. In early 1996, a scientist from Gabon received research
    training on this infectious agent at Yale University. Upon
    return to Gabon, he traced the origin of an
        Ebola-infected patient to a lumber camp. Because of his
    special training, he was able to perform the required
    laboratory studies in collaboration with CDC. As a consequence,
    Gabon was able to confirm the Ebola outbreak, take appropriate
    treatment and prevention measures, and undertake a research
    program to identify the natural history of the virus.
        This new program builds on current research conducted under
    the Fogarty International Research Collaborative Award (FIRCA),
    a small supplemental grant to NIH-supported investigators to
    increase scientific cooperation in this hemisphere and with the
    new democracies of Eastern Europe and the former Soviet Union.
    Since its initiation by Congress in the wake of the fall of
    communism, the FIRCA has supported 64 projects with the former
    Soviet Union and 45 projects with Latin America in scientific
    areas of mutual priority. Under the FIRCA, scientists at the
    Academy of Medical Sciences in Moscow are collaborating with
    the New England Medical Center to determine the extent of Lyme
    disease in Russia and the precise identification of the
    specific microbe isolated from Russian patients. Such
    information is needed as work progresses on the development of
    a vaccine that can be used worldwide. Collaborative research
    between scientists at the University of Oklahoma and the
    Russian Academy of Sciences in St. Petersburg are identifying
    the distinguishing genetic characteristics of Group A
    streptococci, commonly known as ``flesh eating'' bacteria.
    Because microbes are so readily transmitted across
    international borders, the Russian streptococci might be
    imported and cause disease in the United States. If this were
    to occur, knowledge about Russian streptococci would be key to
    diagnostic and treatment strategies.
        The International Training and Research Program in
    Population and Health, now in its second year, supports
    research to improve reproductive and neonatal health care and
    demographic capabilities. The goal is to create a broad range
    of safe, reversible and acceptable contraceptive methods and to
    decrease maternal mortality and morbidity from infections,
    nutritional deficiencies, toxemia, high blood pressure and
    other conditions. The program was launched in partnership with
    the National Institute of Child Health and Human Development.
    The International Training and Research Program in
    Environmental and Occupational Health, also in its second year,
    enables the U.S. to work cooperatively with regions of the
    world with high levels of contaminants in the environment and
    workplace. With the application of new scientific methods, the
    effects of environmental agents on human health will be
    examined and interventions devised to reduce health risks. It
    is notable that the American public was alerted to the
    carcinogenic properties of agents such as dioxin through
    international studies. This program was launched in cooperation
    with the National Institute of Environmental Health Sciences
    and CDC's National Institute for Occupational Safety and
    Health.
        The health consequences of environmental degradation also
    include the potential loss of valuable medicinal products
    derived from nature. For centuries, plants have been the source
    of medicines such as digitalis for heart disease and quinine
    for malaria. Yet only a small fraction of the world's
    biological wealth has been studied for potential therapeutic
    benefit. The International Cooperative Biodiversity Groups
    Program, supported and administered by FIC, is designed to
    discover new drugs from the earth's biological diversity. In
    addition, strategies are pursued to preserve natural ecosystems
    and promote economic growth through drug discovery and
    development. This pioneering program has influenced resource
    management policies in several participating countries, and has
    served as a case-study in international treaty discussions. In
    its first two years, over 3,000 species of plants and insects
    have been examined for their potential therapeutic properties.
    Bioactive samples are now being tested as candidate drugs
    against certain cancers and viral diseases, malaria and
    degenerative neurological disorders. The program is supported
    by several NIH components, the National Science Foundation, the
    U.S. Agency for International Development, and U.S. industries.
    It demonstrates the potential of pooling expertise and
    resources across the public and private sectors.
        Mr. Chairman, the political basis for public investment in
    biomedical research emerged from our nation's critical needs
    during World War II. Today, the pursuit of health through
    research again is integral to our nation's security. Scientific
    solutions to global health threats require a coordinated global
    response. Dr. John Evans, a Canadian who served as chairman of
    the independent Commission on Health Research for Development,
    aptly remarks ``that with increased awareness of global
    interdependence in health, self-interest should reinforce
    humanitarian concerns'' in our efforts to improve global
    health. With the support of Congress, FIC will continue to
    advance this important mission through international
    cooperation.
        Thank you Mr. Chairman. Our fiscal year 1998 budget request
    is $16,755,000. I will be pleased to answer any questions.
                                    ------

      Prepared Statement of Dr. Donald A.B. Lindberg, Director, National
                           Library of Medicine [NLM]

        Mr. Chairman, thank you for the opportunity to appear
    before you today. The last 12 months have been especially
    eventful at the National Library of Medicine. I believe it is
    safe to say that whatever preconceived notions one has about
    what a medical library is and does, the NLM shatters them.
    Previous support by the Congress is resulting in remarkable new
    information products that are finding widespread acceptance not
    only within the medical and science communities but,
    increasingly, with the public. I can also report that the
    Administration's ``Reinventing Government'' initiative has
    taken root at the National Library of Medicine. It is providing
    us with the latitude and efficiency to develop new products
    (such as the Internet Grateful Med described below) and to plan
    for major changes in how we will deliver information services
    in the future.
        To demonstrate what has happened over the past year, I want
    to present a sampling from NLM's broad portfolio of information
    services: imaging databases that save lives, World Wide Web
    access to the world's largest computer resource of medical
    knowledge, a ``human gene map'' now available to all via the
    Internet, progress in reaching a full text retrieval for
    medical information seekers, and diagnosing and treating
    patients via ``telemedicine.'' Let me explain.
        The Visible Humans: I reported to the committee last year
    about two very large datasets the Library commissioned based on
    the imaging of cadavers--a Visible Male and Visible Female.
    Last month's LIFE magazine features on its cover and throughout
    the issue a series of stories based on this project. One
    particularly poignant story is of a 12-year-old Rhode Island
    boy with a tumor on his brain stem that, unless it is removed,
    would kill him in a few years. The surgeon preplans the
    operation using 3-dimensional holograms, based on a practice
    method introduced with the Visible Male. The 6-hour operation
    is a success and the tumor is excised without disturbing
    healthy tissue. ``Spelunking through the body'' is the way
    scientists at the Mayo Clinic have described putting data from
    real patients into applications that were developed using the
    Visible Humans, and then using the computer to traverse through
    the anatomical structures to find and visualize the problem.
        Last fall the Library held a meeting of some of the
    researchers who are using the Visible Human datasets in a
    variety of ways. There are more than 700 projects using the
    data, but a few will give you an idea of their range: non-
    invasive colon cancer screening, visualizing in advance the
    results of plastic surgery, rehearsing prostate cancer surgery,
    training students to do spinal taps with a needle simulator
    and, of course, teaching anatomy. Although we didn't hear
    directly from them, Hollywood animation experts are even using
    the Visible Human dataset to create a movie character.
        Access to MEDLINE: Last year when I testified before you,
    we had just introduced the Internet Grateful Med. You may
    remember that this system affords anyone with access to the
    World Wide Web the ability to register with the Library and to
    search the immense MEDLINE database. The system is easy to use
    and no other software is required. Now MEDLINE may be searched
    not only by medical librarians, scientists, and health care
    providers--the audience for which it was originally intended--
    but members of the general public are now discovering its
    benefits. MEDLINE, as you will recall, is the Library's largest
    and most-consulted database containing more than 8 million
    references and abstracts to medical journal articles.
        The instant appeal of Internet Grateful Med has resulted in
    a dramatic increase in the number of persons using the
    Library's online network--there are now about 150,000--and
    online computer usage statistics are repeatedly hitting all-
    time highs. Internet Grateful Med received another boost in
    popularity when Ann Landers printed a letter from Dr. Michael
    E. DeBakey, a member of our Board of Regents, praising the new
    system. We have already improved the system by adding NLM's
    AIDS and health services research databases to its searching
    capabilities, and more databases will be added in the future.
        Genetic Medicine: Scientists at NLM's National Center for
    Biotechnology Information, working with colleagues at NIH and
    leading genome centers around the world, have put up on the
    World Wide Web ``human gene map'' that contains the
    computerized sequences of more than 16,000 human genes. This is
    roughly one-fifth of the estimated total number of genes in the
    human genome; as scientists unravel more they will be added to
    the map. Now, for the first time, scientists seeking to locate
    the gene for a specific disease have a 1 in 5 chance that it
    has already been described. Among the set of research tools
    provided through the human gene map are the ability to do text
    searches, sequence searches, and to download files containing
    DNA mapping information. We expect the availability of this
    information to researchers around the world to reduce
    substantially the time between identifying the gene culprit for
    a specific disease and developing an appropriate diagnostic
    test and treatment.
        Equally noteworthy about the human gene map is that it will
    provide the public with a running update on scientific progress
    toward specifying the complete human genome. In addition to the
    tools for scientists, the map graphically displays each of the
    23 pieces of chromosomes and provides consumer-friendly
    descriptions of many genes associated with specific disorders,
    for example, Alzheimer's disease, breast cancer, and cystic
    fibrosis. For each, there are links to pertinent foundations,
    voluntary organizations, and other government agencies. Some
    6,000 visitors come to the site each day, ranging from high
    school students to commercial and academic researchers. The
    human gene map takes a complex subject out of the laboratory
    and makes it understandable in the classrooms and in the home.
    Such a widely accessible means of informing the public about
    genetics and the role of genes in disease is essential if
    American citizens are to benefit fully from genetic research.
        The amount of molecular sequence (DNA) information coming
    out of our laboratories continues to increase. NLM's GenBank is
    equal to the task of storing this information; sophisticated
    computer systems developed at the Library allow the data to be
    analyzed, retrieved, and applied by scientists. The GenBank
    database is growing rapidly both in size (it contains 1,114,000
    sequences, up 80 percent in one year) and in use (there are now
    more than 40,000 GenBank queries every day from scientists
    around the world).
        The ``Holy Grail'' Information Retrieval: For more than a
    century, the National Library of Medicine has been viewed on as
    the touchstone of published knowledge in the health sciences.
    In the 1800s the Library ``revolutionized the field'' by
    publishing indexes to the medical literature. In the early
    1960s we first used large computers to process reference data.
    In the 1990s the Library is making its databases widely
    available over the Internet. All this activity was centered on
    references to the literature helping scientists and health
    professionals locate what they really want--the article itself.
    Today, the World Wide Web offers the potential for providing
    access to complete texts of articles, and the NLM has taken the
    lead in developing a system that will to this. The system is
    called PubMed.
        PubMed is an experimental system that links online MEDLINE
    users from an NLM-created reference and abstract to the
    corresponding full-text of a journal article provided directly
    by the publisher. The route of this transaction is the World
    Wide Web. Because of its role as a public biomedical
    information provider, NLM is uniquely positioned to create
    linkages from the publishers--articles not only to MEDLINE
    references, but also to gene sequences, protein structures,
    disease descriptions, and clinical practice guidelines. The
    National Center for Biotechnology Information, which is NLM's
    lead agency in this project, has demonstrated the feasibility
    of the concept by linking a subset of MEDLINE in the area of
    molecular biology to several online journals. We are talking to
    major medical publishers around the world and, soon, it may be
    possible for a scientist or doctor to call up on an office
    computer the full article--photographs, x-rays and all--from
    MEDLINE citations. We will have reached the Holy Grail.
        Telemedicine: As communications technology continues to
    advance at a rapid pace, so too does the promise that it can
    play an important role in delivering health care. Last year we
    noted that the Library had funded several projects in
    telemedicine. We have made an even greater commitment this
    year: In the fall of 1996 the Department of Health and Human
    Services announced the funding by NLM of 19 new telemedicine
    projects. In making the announcement, Secretary Shalala said
    that ``telemedicine offers us some of our best and most cost-
    effective opportunities for improving quality and access to
    health care.'' The 19 multi-year projects, located in 13 states
    and the District of Columbia, total some $42 million.
        Among the studies to be conducted are those providing care
    to center city elderly (California), linking health care
    providers with rural patients (West Virginia, Washington,
    Missouri, and Alaska), linking ambulances to trauma centers
    (Maryland), managing patients in home settings (New York), and
    specialist consultation for diagnosis and treatment (Oregon,
    California). At about the same time these awards were being
    announced, the National Academy of Sciences released a study
    funded by the NLM on criteria for evaluating telemedicine.
    These criteria will be applied to the new projects, as will the
    recommendations from an Academy report (again funded by NLM),
    to be released in March 1997, on best practices for ensuring
    the confidentiality of electronic health data. We hope the 19
    telemedicine projects will serve as models for both evaluation
    and confidentiality.
        Outreach: We continue our efforts to bring the Library's
    information services to the attention of all American health
    professionals. The outreach program received a shot in the arm
    this year from the publicity attendant on the announcements
    concerning Internet Grateful Med, the Visible Human Project,
    the Human Gene Map, and the telemedicine awards. They all
    received considerable attention in the print and electronic
    media. Although usage of the Library's services continues to
    climb, outreach remains one of our highest priorities. We know
    that there are many more who could benefit from MEDLINE and
    other NLM information resources.
        Of inestimable help in the Library's outreach program is
    the National Network of Libraries of Medicine. The mission of
    the Network, since its formation in the 1960s, has always been
    to make biomedical information readily accessible to U.S.
    health professionals irrespective of their geographic location.
    The eight Regional Medical Libraries that form the backbone of
    the Network are supported by contracts from the NLM. To
    continue their successful programs, the NLM recently awarded
    new contracts totaling $34 million over the next five years to
    the eight institutions that are serving as Regional Medical
    Libraries for the national network. Today there are some 4,500
    institutional members of the Network providing a wide range of
    services to American scientists, educators, practitioners, and
    the public. They conduct many outreach activities, including
    exhibits, hands-on workshops, and training. One emphasis in the
    new contracts is to make even greater use of the National
    Information Infrastructure, and especially the World Wide Web,
    in providing information services to health professionals.
        One highly successful outreach tool is the World Wide Web
    site maintained by the NLM at http://www.nlm.nih.gov. Not only
    is MEDLINE accessible there (through Internet Grateful Med),
    but extensive information files in health services research,
    molecular biology information (such as the Human Gene Map),
    patient guidelines, image databases, and much more. These
    information resources, although provided over the Web, are in
    many cases grounded in the basic medical library services that
    the NLM has built up over the past century and a half.
        NLM also has an Extramural Program for providing grant
    assistance to further the Library's objectives. Several of
    these are outreach-related, including support to connect
    medical institutions to the Internet. Other extramural programs
    support improving library resources within the National Network
    of Libraries of Medicine, research and development into health
    science communications, and research training in medical
    informatics and the related subfields that deal with
    biotechnology and molecular biology.
        Mr. Chairman, for fiscal year 1998 the President has
    requested a total of $152,689,000 for the Library. I would be
    pleased to answer any questions you have.
                                    ------

        Prepared Statement of Dr. Ruth L. Kirschstein, Deputy Director,
                      National Institutes of Health [NIH]

        Mr. Chairman, Members of the Committee, we are pleased to
    be here today to discuss the fiscal year 1998 budget request
    for the Office of the Director (OD). As you know, the OD
    provides leadership, coordination and policy direction for the
    overall extramural and intramural research and research
    training programs of the various Institutes and Centers (ICs),
    as well as the special offices within the OD. The office also
    provides management leadership and centralized support
    activities essential to the operations of the entire NIH.
        The NIH Institutes and Centers (ICs) conduct medical
    research programs to foster scientific discovery and to
    disseminate advances in scientific and medical applications to
    NIH's stakeholders---health care providers and their patients,
    and the general public. Furthermore, the ICs support
    initiatives within the research community to accomplish these
    two objectives through their infrastructure programs related to
    research training and facilities. The OD facilitates and
    encourages the attainment of these objectives through its
    program direction and central support offices. This is
    accomplished by a trans-NIH focus that emphasizes IC-wide
    cooperation in special programs to improve the health of women,
    minorities, and the medically underserved; to support research
    in the social and behavioral sciences; and to encourage
    research on rare diseases, dietary supplements and alternative
    and complementary medicine. These coordinated efforts are
    focused in the OD and are the responsibility of specially
    designated offices and programs. With such cooperation, we hope
    to continue to improve the health of the Nation and decrease
    the burden of disease and disability through research. I will
    describe in further detail the offices that carry out these
    functions in the OD.

                  office of research on women's health (orwh)

        The ORWH budget request will allow this office to continue
    its role as the focal point for research in health and disease
    areas that appear to affect women. Funding will enable ORWH to
    assess compliance with revised policies regarding the inclusion
    of women and minorities in research studies, continue
    activities to assure that all NIH research studies include
    women and minorities as subjects, and continue programs to
    increase the number of women in biomedical research careers.

                   the office of research on minority health

        The budget request for the Office of Research on Minority
    Health (ORMH) and the Minority Health Initiative (MHI) provides
    continued funding for a series of multi-year research studies
    aimed at improving the health of minority populations and
    continuing existing programs to prepare minority scientists for
    careers in biomedical sciences.
        Current minority health priorities include increasing the
    number of minorities who participate in clinical research
    studies; conducting research studies that address the highest
    priority health needs of minority populations, such as infant
    mortality, low birth weight, asthma, and lead exposure in
    childhood; and increasing the number, and scientific skills, of
    minority scientists engaged in research.

           office of behavioral and social sciences research (obssr)

        It is clear that behavioral patterns and social status are
    risk factors in an array of health problems. The budget request
    for the OBSSR will enable the office to stimulate research in
    the behavioral and social sciences and to disseminate findings
    from this research to the public. Such efforts will include a
    trans-NIH initiative for research on the four leading health
    risk factors in the U.S.---physical inactivity, smoking, diet,
    and alcohol abuse. OBSSR is joined in this initiative by the
    National Center for Research Resources, the National Institute
    on Drug Abuse, the National Institute of Nursing Research, and
    the National Institute of Dental Research.

                        the office of disease prevention

        Maintenance of health and prevention of disease are
    critical to the length and quality of life. All of the NIH
    institutes and centers have programs in prevention research
    which are coordinated by the Office of Disease Prevention
    (ODP), as follows:

                         the women's health initiative

        The Women's Health Initiative (WHI), a $628 million, 15-
    year project involving 164,500 women, aged 50-79, is a trans-
    NIH activity which focuses on strategies for preventing heart
    disease, breast and colorectal cancer, and osteoporosis in
    older women. The 1998 budget request of $54.719 million
    reflects a planned decrease from last year's level, since it is
    based on completion of the recruitment phase of the study in
    May 1998. As such, the Initiative continues to be on budget and
    on schedule. In addition, we expect to reach our goal of 20
    percent participation in the study by minority women. As of
    December 31, 1996 over 16 percent of the 91,000 women recruited
    were from minorities, probably the largest number of minority
    women ever studied in the United States.

                       the office of alternative medicine

        Alternative medicine is becoming increasingly popular, and
    it is expected that research in this area will help to identify
    new and effective practices. The Office of Alternative Medicine
    (OAM) has been established to investigate and validate
    alternative medical therapies, and to recommend a research
    program to fully test the most promising of these practices.
    Alternative medical practices include the use of herbal
    medications, homeopathy, and acupuncture. The budget request
    for the OAM includes funds to support collaborative research
    and training efforts in complementary and alternative medical
    practices in areas such as cancer, addictions, asthma and in
    the study of pain. In fiscal year 1998 we also plan to award
    and continue support of a yet to be selected Congressionally
    mandated chiropractic center to foster chiropractic-related
    research.
        Another part of the disease prevention activities concerns
    rare diseases--those diseases having a prevalence of 200,000 or
    fewer cases per year in the U.S. The ODP's, Office of Rare
    Diseases Research (ORDR) provides information on rare diseases
    and conditions, and links investigators with research
    activities on those diseases. The budget request will enable
    ORDR to continue to stimulate research endeavors that provide
    criteria for diagnosing and monitoring these rare conditions
    and disorders.
        The Office of Dietary Supplements (ODS) was established in
    fiscal year 1996 to support research related to the use of
    dietary supplements, their health benefits and their role in
    disease prevention. The ODS budget request for fiscal year 1998
    will enable the office to stimulate research on the use of
    dietary supplements through grants, conferences and workshops,
    and to conduct a study to determine what type of information is
    needed to respond to public questions regarding the use of
    dietary supplements.

                              other od activities

        As noted before, other OD entities such as the Office of
    Extramural Research (OER), the Office of Intramural Research
    (OIR), the Office of Science Policy (OSP), and the Office of
    Management, provide leadership in regard to the overall
    extramural, intramural, and management activities of NIH,
    setting policies and defining goals that enable ICs to
    effectively and efficiently fulfill their missions.
        In addition, the OER coordinates the Academic Research
    Enhancement Award (AREA) program that provides grants to those
    institutions that award degrees in health sciences but are not
    major recipients of NIH grant funds.
        The OIR coordinates NIH's loan repayment and scholarship
    programs. This year the request includes funds to initiate a
    new Clinical Research Loan Repayment Program to repay the
    educational loans of clinical investigators conducting research
    in extramural programs supported by NIH. Fifteen awards will be
    made under this new program, in addition to those made
    currently. The OIR also manages the Undergraduate Scholarship
    Program for Individuals from Disadvantaged Backgrounds. This
    program provides scholarships of up to $20,000 per year, in
    return for which the students agree to participate in 10 weeks
    summer employment at the NIH and a year of service after
    graduation for each year of scholarship. There are currently 13
    individuals enrolled, all of whom are under-represented
    minorities. OIR also oversees the care and use of research
    animals, and is responsible for the high standards in this area
    that have led to AALAC accreditation of the animal facilities
    within NIH.
        The Office of Science Policy (OSP) coordinates all phases
    of science policy and science education, and addresses issues
    in areas in which science interfaces with society at-large,
    such as the privacy of medical and genetic information
    collected during clinical trials or in the performance of human
    genetic therapy protocols. The OSP also coordinates a number of
    science education activities that benefit both students and
    teachers.
        Other OD offices provide the public with science-based
    health information, advise the Director on legislative issues,
    and provide policy direction to assure that NIH personnel have
    equal employment opportunities. In this respect, I am happy to
    report continuing progress in maintaining a diverse workforce
    within OD with increases in each minority group and in the
    placement of minorities in all grade levels including senior
    level employment. In addition, OD has introduced alternate
    dispute resolution techniques to resolve employee issues and
    this program achieved a resolution rate of 98 percent last
    year.
        Continuing NIH's efforts to improve management, at the
    request of Chairman Porter, the NIH has initiated a
    comprehensive review of its administrative structure and
    associated costs to document the effectiveness of current
    practices and to identify areas for future improvements. The
    effort is intended to cover Research Management and Support
    costs and those administrative costs financed by the intramural
    research program. The review is being led by a Project Director
    who is managing an outside contract effort aimed at further
    conceptualizing and formally conducting the review itself. The
    Project Director serves as chair of an Advisory Committee that
    is assisting in overseeing the contractors' efforts, and in
    reviewing recommendations for enhancing administrative
    efficiency that emerge from the review. This arrangement will
    bring together the objectivity of an independent contractor
    with the knowledge and expertise of NIH managers. It is
    expected that the study will identify best practices for a
    range of administrative functions that could be adapted across
    the agency.
        The fiscal year 1998 budget request for the Office of the
    Director is $234.2 million. I will be pleased to answer
    questions.

      DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
              RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1998

                                  ----------

                                           U.S. Senate,
               Subcommittee of the Committee on Appropriations,
                                                        Washington, DC.

                                RELATED AGENCIES

        [Clerk's note.--The subcommittee was unable to hold
    hearings on related agencies, but the statements of those
    submitting written testimony are as follows:]

                   PROSPECTIVE PAYMENT ASSESSMENT COMMISSION

           Prepared Statement of Joseph P. Newhouse, Ph.D., Chairman
        I am pleased to submit this testimony for the record presenting the
    appropriation request for the Prospective Payment Assessment Commission
    (ProPAC) for fiscal year 1998.
                          commission responsibilities
        The Commission was created in 1983 to serve the analytic and
    information needs of the Congress and to provide objective
    recommendations from a knowledgeable group of citizens. The Commission
    is composed of physicians, nurses, and other individuals with expertise
    in hospital and other health care facility management, third-party
    payment (including managed care), health care economics, and health
    services research. The membership of the Commission also reflects a
    broad geographic representation, including urban and rural areas.
        Initially, our responsibilities were limited to the Medicare
    hospital prospective payment system (PPS). Over the years, however, the
    Congress has expanded our mandate to include all Medicare inpatient and
    outpatient hospital services, as well as skilled nursing facility, home
    health, and ESRD dialysis services. In addition, we perform analyses
    and make recommendations concerning Medicare's risk contracting option.
                                  current work
        We submitted our annual Report and Recommendations to the Congress
    on March 1, 1997, and our annual report on Medicare and the American
    Health Care System on June 1, 1997. Our work, including the reports we
    submit to Congress, is determined by statute and by requests from
    committees.
        In addition to our reports, we frequently testify before Congress
    concerning Medicare's payment policies. We testified at eight committee
    hearings this Spring to assist Congress in developing the Medicare
    legislation it is now considering. We also meet regularly with the
    staff and members of various committees to provide information on
    proposals they are developing. In the past year, we prepared numerous
    briefing papers and background documents for committee members and
    staff in support of legislation to reform and improve the Medicare
    program. Many of the Commission's recommendations have been
    incorporated into these legislative proposals, and in numerous cases
    data and information the Commission provided were a critical
    contribution to the development of policies.
                     fiscal year 1998 appropriation request
        For fiscal year 1998, ProPAC is requesting an appropriation of
    $3,579,000, an increase of $316,000 from our 1997 amount (see Chart 1).
    Our appropriation was reduced 30 percent for fiscal year 1996. In 1997,
    it was essentially frozen. Consequently, our request for fiscal year
    1998 is less than our appropriation ten years ago. In terms of
    available funds, this is comparable to a funding freeze for 10 years,
    despite inflation and major expansions of our responsibilities over
    that time. The 30 percent reduction and subsequent freeze has required
    us to reduce the number of staff by 30 percent, to curtail the number
    of analyses that we are able to perform, and to reduce the number of
    Commission meetings.
        A major reason for our funding reduction for fiscal year 1996, as
    well as that of the Physician Payment Review Commission (PPRC), was the
    anticipated merger of ProPAC and PPRC that was included as part of the
    Medicare legislation that was vetoed by the President. Current Medicare
    legislative proposals again provide for a merger of the two
    commissions. This merger, however, would result in only modest
    administrative savings, which are far less than the funding reductions.
    Moreover, the legislation under consideration provides for sweeping
    changes to the Medicare program and added responsibilities to the
    mandate of the merged commission above and beyond those currently
    required of each of the Commissions individually. Our appropriation
    request provides for a modest increase to enable us to analyze these
    changes to the Medicare program and to make appropriate
    recommendations, whether or not a merger occurs.
    The impact of a continuing appropriation freeze
        Mr. Chairman, you asked us to address what impact a continuing
    freeze of our appropriation level from fiscal year 1997 through 2002
    would have on the function of the Commission. Such a freeze would
    result in an appropriation in fiscal year 2002 that is less than our
    appropriation in fiscal year 1987, 15 years earlier. Simply put, a
    freeze that would effectively extend over 15 years would significantly
    reduce the number and extent of the analyses that we could undertake
    and the support that we could provide to the Congress at a time of
    fundamental changes to the Medicare program. We believe such a scenario
    would lessen the ability of the Congress to continue to reform the
    Medicare program based on data and information regarding policy options
    and their effects on Medicare spending and the care furnished to
    beneficiaries.
        If Medicare legislation is enacted this year, many interest groups
    will turn their efforts to presenting data that will bolster their
    position on the law's impact and their desire for favorable changes. It
    will be extremely important for Congress to have objective analyses as
    you consider additional modifications to the Medicare program. Many of
    these modifications are called for in the legislation currently under
    consideration and others will be necessary. Consequently, a sufficient
    level of resources will be more important than ever for the Commission
    to provide needed advice and analysis to the Congress.
        Since 1996, we have reduced our staffing levels by 30 percent and
    severely curtailed extramural data gathering and analysis. This
    extramural work is especially necessary to evaluate and recommend
    improvements to Medicare's capitation program since the kinds of cost
    and utilization information available for the fee-for-service program
    is not available for this program. A continuing freeze at our current
    appropriation level will require continued reductions in the number of
    staff as inflation escalates our fixed costs. Consequently, the number
    of analyses, background, and briefing papers we will be able to produce
    for the Congress will also decline.
    Investments in automation
        You also asked, Mr. Chairman, whether investments in automation had
    improved the efficiency of our organization. Personal computers are an
    essential component of our work. The overwhelming amount of our data is
    in very large files which require the use of the mainframe computer. We
    have, however, developed the capacity to create smaller files for use
    on our personal computers. In the past month, as the House and Senate
    have been developing their Medicare proposals, we have had dozens of
    requests from Members of Congress and committee staffs for specific
    analyses that we were generally able to complete within 48 hours
    because we anticipated this need and had the computer tools set up to
    respond.
        This past year, we installed a local area computer network and
    established a connection to the Internet. In the past few weeks, we
    have used our electronic mail capability to answer questions from
    Congressional staff virtually instantly and to provide briefing papers
    and talking points for staff and members. Some staff also have been
    able to access our Internet service provider from home to respond to
    urgent requests for information from Committee staff on nights and
    weekends. The network has also allowed us to easily share data and
    information among our staff, reduce the paper duplication of materials,
    and communicate more quickly and effectively both within and outside
    the ProPAC staff.
        Although there is no doubt this automation has improved our
    efficiency, it has also increased our work load as the Congress has
    increasingly used this expanded capability to request additional
    information and assistance.
    Staffing
        The major item in our budget is staff salaries and benefits. By
    statute, the Commission can employ an Executive Director and up to 25
    full-time equivalent staff. Until 1995, we operated at this level. As a
    result of the 30 percent reduction in our fiscal year 1996
    appropriation, and the uncertainties regarding future funding, we have
    operated over the past two years with between 16 and 18 staff.
        The Commission's staff is responsible for completing the complex
    analytic studies that form the basis for the Commission's
    recommendations, reports, and testimony. The staff also prepares
    background and briefing materials for Congressional committees,
    regularly consults with committee staff, and at times briefs individual
    members. This substantial reduction in the number of staff has limited
    our ability to undertake a number of important analyses and to provide
    comprehensive information on important topics to Congress. Our budget
    request for fiscal year 1998 would allow us to increase the number of
    staff to 20.
    Computer and analytic support
        The other large budget item is for computer programming and the use
    of the mainframe computer. We use the computer resources of the U.S.
    House of Representatives (HIR). We are requesting $940,000 for these
    activities, an increase of $40,000 for computer time and $40,000 for
    programming. Our spending in this area increased dramatically when the
    Congress expanded our responsibilities. The analyses we undertake, such
    as those necessary to examine and recommend methods to curtail the
    rapid growth in Medicare spending for post-acute care, are very complex
    and require very large data bases. The findings from these analyses,
    however, were instrumental in the develop of payment reforms to slow
    Medicare spending growth.
        We are also requesting an increase of $50,000 in our extramural
    research budget. We use this budget item to obtain data and information
    that is not otherwise available. For example, the work we have reported
    to you over the years on the levels of hospital uncompensated care and
    the effects of Medicare, Medicaid, and private sector payments on
    hospitals was funded through this budget item. While we have continued
    this project, in the past two years funding limitations led us to
    greatly curtail other important data gathering activities. Such
    extramural studies, for example, are necessary to obtain information on
    the services furnished to Medicare beneficiaries enrolled in the risk
    contracting program.
    Other budget items
        The remaining portions of our budget include the funding necessary
    for payment of Commissioners for travel and time spent on Commission
    business; for facilities, supplies, equipment, and travel; for
    communications with the public, including maintenance of mailing lists,
    publication of reports, expenses required by open meetings of the
    Commission, and for other administrative expenses associated with
    facilitating the work of the Commission. The General Services
    Administration (GSA), under contract to ProPAC, provides personnel,
    payroll, and accounting services. GSA also arranges on our behalf for
    office space, telecommunications services, and travel services at
    government contract rates.
        In the past several years, the number of requests for our reports
    has grown rapidly putting pressure on our printing budget. Costs for
    Commissioner travel, meeting space, supplies, computer upgrades, and
    the other items we have purchase have continued to increase. As I
    noted, as long as our appropriation level is frozen, these added costs
    can be covered only by continuing to reduce staff or data gathering and
    analytic activities.
    Conclusion
        Mr. Chairman, I know that Congress and this Subcommittee are
    committed to eliminating this nation's annual deficit and improving the
    operation of the Federal government. These activities attract a lot of
    attention and require data and information to balance many competing
    claims. The Department of Health and Human Services has strong research
    and analytic capabilities to bolster their proposals. Many interest
    groups also have the funds to develop and present information to
    Congress to support their views. To enact the Medicare policies
    necessary to slow spending growth, ensure the solvency of the Medicare
    Part A trust fund, and continue to provide access to quality care for
    Medicare beneficiaries, the Congress must also have timely and useful
    information.
        For 13 years, ProPAC has provided Congress with the information it
    needs to evaluate and choose among Medicare policy options. In making
    your difficult decisions among budget requests from competing programs,
    I hope you will consider the importance of our work to the Congress and
    the consequences of what in fiscal year 1997 is comparable to a 10 year
    freeze in our appropriation level.

                                        PROSPECTIVE PAYMENT ASSESSMENT COMMISSION
                               [Budget authority by object class in thousands of dollars]
    ----------------------------------------------------------------------------------------------------------------
                                                               Fiscal year--
                  Object classification              --------------------------------     Change        Fiscal year
                                                        1996 actual    1997 estimate                   1998 request
    ----------------------------------------------------------------------------------------------------------------
    Salaries:
        Full-time staff.............................          $1,136          $1,221           +$128          $1,349
        Commissioners...............................              84              96  ..............              96
                                                     ---------------------------------------------------------------
          Total.....................................           1,220           1,317            +128           1,445
                                                     ===============================================================
    Benefits........................................             309             340             +33             373
                                                     ===============================================================
    Travel:.........................................
        Staff.......................................              14              18  ..............              18
        Commissioners...............................              64              79              +7              86
                                                     ---------------------------------------------------------------
          Total.....................................              78              97              +7             104
                                                     ===============================================================
    Standard level user charges.....................             256             256  ..............             256
                                                     ===============================================================
    Mainframe computer..............................             492             400             +40             440
    Telephone.......................................              13              30  ..............              30
    Postage.........................................              15              22  ..............              22
                                                     ---------------------------------------------------------------
          Total.....................................             520             452             +40             492
                                                     ===============================================================
    Printing and reproduction.......................              73              98              -3              95
                                                     ===============================================================
    Computer programming............................             565             460             +40             500
    Research contracts..............................              24             100             +50             150
    Commercial contracts............................              94              70              +5              75
    Government contracts............................  ..............               1              -1  ..............
    GSA support.....................................              34              35              +3              38
                                                     ---------------------------------------------------------------
          Total.....................................             717             666             +97             763
                                                     ===============================================================
    Supplies........................................              22              17              +3              20
    Publications....................................              11              10              +1              11
                                                     ---------------------------------------------------------------
          Total.....................................              33              27              +4              31
                                                     ===============================================================
    Equipment and furnishings.......................              20              10             +10              20
                                                     ===============================================================
    Lapsing.........................................              41  ..............  ..............  ..............
                                                     ---------------------------------------------------------------
          Total.....................................           3,267           3,263            +316           3,579
    ----------------------------------------------------------------------------------------------------------------
    Note: Numbers may not add to totals because of rounding.

                                    ------

                      PHYSICIAN PAYMENT REVIEW COMMISSION
                 Prepared Statement of Gail R. Wilensky, Chair
        Mr. Chairman, I am pleased to report on the activities and work
    plan of the Physician Payment Review Commission. For more than a
    decade, the Commission has enjoyed a strong working relationship with
    the Congress. That is no more apparent than in the past few years in
    which the Commission has worked closely with Members and congressional
    staff to develop options for restructuring the Medicare program.
    Congressional requests for assistance have been at an unprecedented
    level, and the Commission has responded despite a 30 percent reduction
    in its budget in fiscal year 1996. In the short term, the Commission
    has been able to maintain its level of effectiveness under current
    budget constraints, but it expects this to become more difficult
    without the increase in resources it requests for fiscal year 1998.
        The Commission was established in 1986 to advise the Congress on
    Medicare physician payment reform. With the expertise of its 13
    Commissioners and a strong analytical staff, it has established a track
    record of providing useful and timely advice to the Congress. Its work
    has been strengthened by a tradition of consensus in shaping
    recommendations on difficult issues.
        The Commission's recommendations formed the basis for the Medicare
    physician payment reforms enacted in 1989. Subsequently, the Congress
    expanded the Commission's mandate to:
      --Monitor the impact of physician payment reform and advise the
            Congress on setting standards for expenditure growth and
            updating fees in the Medicare Fee Schedule; and
      --Consider policies related to financing graduate medical education,
            reforming the medical liability system, ensuring quality of
            care, improving access in underserved areas and for Medicaid
            beneficiaries, and controlling health costs faced by employers.
                           commission accomplishments
        This past year the Commission focused on providing advice to the
    Congress on the restructuring of Medicare, while continuing to monitor
    the effects of physician payment policy. It kept the Congress informed
    of its progress through reports, informal briefings, and testimony.
    Annual report
        The Commission's Annual Report to Congress 1997 responded to
    congressional interest in Medicare's managed-care program by evaluating
    key policy issues such as improving Medicare's policies for determining
    capitation payments to managed-care plans, improving Medicare's methods
    of risk adjustment, and including provider-sponsored organizations as
    an option for Medicare beneficiaries. Other managed-care issues
    considered include access to care in Medicare risk plans, access for
    vulnerable populations, use of quality and performance measures,
    program data needs and health plan data capabilities, and consumer
    protection issues.
        The report also examined the impact of the 1989 payment reform on
    physicians and beneficiaries. It proposed recommendations for
    addressing issues related to the design of that reform or its
    implementation. Its analyses provided a foundation for current
    congressional deliberations on options to both improve the Volume
    Performance Standard system and respond to issues related to the
    development and implementation of resource-based practice expense
    relative values in the Medicare Fee Schedule.
        The Commission's report included several issues with implications
    beyond Medicare such as the role of secondary insurance, the impact of
    changes in the health care market place on the physician labor market
    and on academic medical centers, the effects of reform on dual
    eligibles (people covered by both Medicare and Medicaid), and the
    growth of Medicaid managed care. The implications of moving Medicare to
    a competitive premium contribution model were also considered.
    Mandated reports
        More recently, the Commission also submitted mandated reports on
    Volume Performance Standards (VPS), access to care for Medicare
    beneficiaries, and beneficiary financial liability. The VPS report made
    recommendations for setting performance standards and conversion factor
    updates. The access report showed that access remained good for most
    beneficiaries, but some vulnerable groups continued to experience
    problems. The report on beneficiary financial liability documented
    increases in physician participation and assignment rates and decreases
    in balance billing. New analyses were presented describing
    beneficiaries' liability for out-of-pocket costs beyond those
    attributable to the use of physicians' services.
    External studies
        While the Commission's reduced appropriation for last year
    precluded funding external studies, we were able to publish two
    additional reports on studies funded previously. One, which we
    presented in testimony before this subcommittee, described the results
    of a Commission-sponsored survey on access in Medicare managed-care
    plans. This is the first national survey of Medicare beneficiaries who
    are enrolled in or disenrolled from managed-care plans. The second
    report focused on managed-care products, delivery systems, and
    arrangements with providers.
    Updates and basics
        The Commission recognizes the vital importance of providing
    information to the Congress in a concise and timely manner. Based on
    input from congressional staff, the Commission launched a new Update
    series, which briefly highlights Commission work on specific issues. We
    have issued 19 Updates so far on such topics as risk selection, access
    in Medicare managed care, expenditure growth in Medicare, resource-base
    practice expense payments, and the physician labor market.
        The Commission also has prepared chart books for Members and staff
    on Medicare managed care and on graduate medical education. In
    addition, it has designed a new Medicare Basics series that describes
    the essential elements of Medicare managed-care and fee-for-service
    policies. We have received very favorable comments from congressional
    staff on the usefulness of these new publications which provide a
    concise explanation of key issues being considered in current
    deliberations on Medicare.
    Ongoing advice to Congress
        This past year, Commission staff spent considerable time responding
    to requests from congressional staff for information and technical
    advice. They have been in daily contact with committee staff
    considering different policy options, participated in drafting
    sessions, and provided information to health staff throughout the
    Congress. Staff have also conducted briefings for Members and
    congressional staff on Medicare capitation payments, payment issues for
    rural areas, and restructuring Medicare. These activities have
    accelerated in recent months as staff and Members have worked to
    develop a new Medicare package. For example, Commission staff have
    played a central role in simulating the impact of alternative policies
    to change Medicare capitation payment rates during the recent
    congressional deliberations.
    Testimony and briefings
        In addition to the ongoing analytical support and advice provided
    to congressional staff during the past year, the Commission presented
    formal testimony at numerous committee hearings. It testified before
    each of the committees with jurisdiction over Medicare policy as well
    as the Senate Special Committee on Aging. As you know, it also
    testified before this subcommittee concerning the Commission's survey
    on access in Medicare managed care. Since January, Commissioners and
    staff have participated in more than seven hearings and 19 briefings.
    Given the continued importance of Medicare on the congressional agenda,
    the Commission anticipates a very active year working with the
    Congress.
    Commission work plan
        The Commission's appropriation request submitted to the Committee
    on Appropriations in February presented the details of our work plan
    for fiscal year 1998. It is not possible in this brief statement to
    touch on all the issues we will take up. Instead, I would like to begin
    by telling you how we approach our work and the broad issue areas we
    will address. Then I will highlight work on some issues of immediate
    interest to the Congress.
        After developing an initial work plan, we revise it and set
    priorities in consultation with committee staff and Members of
    Congress. We believe that the Congress is best served by this process
    of consultation and expect that specifics of our work plan will evolve
    in the coming months because of it. Moreover, the precise nature of the
    work we do, in part, depends on congressional actions taken between now
    and the coming fiscal year. If legislation is enacted, our focus on
    some topics will shift from policy design to issues of implementation,
    monitoring the effects of reform, and policy refinements requiring
    congressional action.
        The Commission's plans include work on issues specifically related
    to Medicare fee for service and managed care as well issues that affect
    the entire program. Medicaid policy issues and issues raised by changes
    in the broader health care market will also be addressed.
    Expanding options for medicare beneficiaries
        As the Congress considers restructuring the Medicare program, the
    Commission's work will continue to inform deliberations on key elements
    of a policy to expand options for Medicare beneficiaries and constrain
    spending growth. If legislation is enacted later this year, the focus
    of our work will shift to monitor the law's implementation, assess its
    impact, and identify areas for further attention. In either case, our
    analytic agenda will focus on several pivotal issues.
        First, revising the current method used to pay health plans is
    critical. Without that change, the program will perpetuate wide
    geographic variation in payments, create barriers to access for
    beneficiaries with high-cost medical problems, and risk spending more
    than necessary for beneficiaries who enroll in managed-care plans. The
    Commission sees its assessments of both new payment methods and
    strategies to implement improved risk adjustment as top priorities in
    advising the Congress.
        As new types of health plans are offered to beneficiaries,
    questions about standards for participation, the enrollment process,
    measures to facilitate informed choice by beneficiaries, and consumer
    protections must all be examined. Moreover, current strategies for
    monitoring both quality and access must be revised because of the
    differences in service delivery and availability of data between fee
    for service and managed care. These are all issues that the Commission
    will continue to address in the coming year.
    Federal premium contribution
        Proposals to restructure Medicare address many of the limitations
    identified with the current program. Some policy experts caution,
    however, that these changes may lead to distortions in local health
    care markets and that further measures will be necessary to control
    program expenditures. They propose replacing Medicare's current defined
    set of benefits with a federal contribution for beneficiaries to use in
    purchasing coverage from a variety of approved health plans. Because
    this would represent a significant departure from the current Medicare
    program, the Commission has begun to set out the issues and
    implications of such a change to allow for a more informed discussion
    of such proposals.
    Volume performance standard and practice expense
        While the policy debate in the past few years has focused on
    Medicare managed care, some important issues in Medicare fee for
    service remain of concern to the Congress. Two of the most pressing are
    the correction of flaws in the Volume Performance Standard system that
    is used to update payments under the Medicare Fee Schedule and
    implementation of resource-based practice expense relative values in
    the fee schedule.
        Both the Congress and the Administration have proposed a revision
    of the VPS system, called the sustainable growth rate system, which
    would incorporate many of the Commission's previous recommendations to
    correct the limitations of the VPS. The Commission will continue to
    work with the Congress on the specific design of the policy, and will
    comment on its implementation as part of its mandated responsibilities
    to advise the Congress each year on setting targets for spending on
    physician services and updating fees.
        The immediate concern with practice expense relative values is what
    steps must be taken to refine the proposed values released by the
    Health Care Financing Administration (HCFA) earlier this month.
    Although current law calls for implementation in January 1998, it is
    anticipated that this will be delayed for a year, and a multiyear
    transition will be put in place. The Commission is now analyzing HCFA's
    proposed rule to advise the Congress on the new relative values and the
    process HCFA plans to use in refining them. Having conducted pioneering
    work that led to the legislation mandating HCFA to develop resource-
    based practice expense relative values, the Commission is in a unique
    position to continue to monitor their development and implementation.
    Improving the traditional Medicare Program
        The Commission's work on fee for service extends to consideration
    of how the traditional Medicare program will fare under policies to
    expand the range of health plan options for Medicare beneficiaries. Two
    issues of particular importance are how to improve the efficiency of
    the fee-for-service program and how to constrain expenditures across
    all sectors of the traditional program.
        The Commission will build on work begun last year to examine the
    potential for Medicare's greater use of care-management techniques
    adapted from private indemnity insurers. It will also assess the
    feasibility of incorporating a preferred provider option into the
    traditional fee-for-service Medicare program.
    Graduate medical education
        Concerns about federal health care spending coupled with questions
    about the supply and specialty distribution of physicians have focused
    attention on Medicare funding of graduate medical education (GME). The
    Commission monitors changes in the markets for both practicing
    physicians and residents to provide a context for considering policy
    change. This information would not be available to the Congress without
    the Commission's analysis. Our work plan is intended to inform
    decisions about the rationale for continued federal support for
    residency training as well as the design of funding mechanisms.
    Appropriation request for fiscal year 1998
        The Commission requests $3,577,646 for fiscal year 1998, an
    increase of $314,646 above our 1997 appropriation. Even with this
    increase, the Commission's budget for next year will be nearly 20
    percent below its fiscal year 1993 appropriation. The Commission's
    budget was reduced by 30 percent in fiscal year 1996 in anticipation of
    a merger with the Prospective Payment Assessment Commission (ProPAC)
    which did not occur. This came on top of Commission efforts to
    streamline its operations, which had already allowed it to reduce its
    appropriation requests by 8 percent in the three years prior to fiscal
    year 1996.
        At a time when the demand for the Commission's analyses and advice
    has never been higher, its resources to respond have been significantly
    reduced. Nonetheless, the Commission has made every effort to fulfill
    its congressional mandates and respond to congressional requests. It
    has also taken further steps to restrain costs. With the experience of
    adjusting its operations for its lower appropriation level, the
    Commission believes that it could maintain its essential activities
    with the modest increase requested for fiscal year 1998. This funding
    level, however, will still require the Commission to make trade offs
    between short-term analyses responding to congressional requests and
    longer-term policy analysis and data development that provide the
    foundation for its work.
        Once again, there is pending legislation to merge the Commission
    with ProPAC. Our budget request has taken into account that possible
    merger. While there are likely some administrative savings associated
    with such a merger, those savings were already realized in the 30
    percent reduction in each commission's appropriation in fiscal year
    1996. Moreover, there will be some additional initial costs associated
    with a merger (such as moving costs), which come from combining two
    organizations into a single, functioning entity.
        The increase proposed by the Commission for fiscal year 1998 would
    be distributed among three main budget items: staffing, computer
    services, and outside contracts. The appropriation requested would
    maintain the Commission staff who are critical to producing the
    analytical work that supports both the Commission's recommendations and
    its ongoing assistance to the Congress. During the past two years, the
    Commission has placed a high priority on retaining its highly trained
    and productive staff, even when faced with its recent significant
    budget reductions. The Commission proposes a 4.9 percent increase in
    funding for salaries and accompanying benefits. We have been reluctant
    to recruit staff in recent years because of the uncertainty regarding
    the Commission's funding. This modest increase would provide the
    opportunity to add one staff position to keep up with the increase in
    congressional demand for analysis and policy advice.
        Much of the analysis conducted for the Congress involves the use of
    large data bases, such as the Medicare physician claims files and data
    on enrollment, plan participation, and payment rates for the Medicare
    risk-contracting program. Given the nature of the issues before the
    Congress and the data bases that can be used to study these issues, a
    major proportion of the Commission's budget supports quantitative
    analysis.
        By introducing measures to increase the efficiency of its computer
    work, the Commission was successful in reducing its computer services
    budget by over 40 percent between fiscal year 1993 and fiscal year
    1996. With the reductions in the Commission's appropriation last year,
    the funds available to support quantitative work dropped by an
    additional 36 percent. At this level of funding, the Commission has had
    to curtail or delay certain analyses. In the short term, its work may
    not suffer substantially from these constraints. The Commission
    believes, however, that the analytic support expected by the Congress
    (particularly with the high priority placed on Medicare restructuring)
    cannot be sustained without an increase in the funds for computer
    services. It therefore proposes an increase of $125,000 over its
    current funding level for this budget category.
        Funds to support outside contracts for policy analysis and data
    development allow the Commission to expand its access to needed data
    and to make use of specialized analytic resources available in the
    private sector. Projects supported by these funds have ranged from
    fairly large contracts for surveys to quite small projects, such as
    preparation of expert background papers.
        Due to reductions in its appropriation, the Commission was not able
    to support any new studies and had to halt some of its ongoing
    analyses, because it could not purchase the necessary data. The lack of
    funds for contracted studies was not so apparent in the past year,
    because the Commission was able to publish new data on access from its
    survey of Medicare beneficiaries enrolled in managed-care plans. This
    survey, however, was funded out of fiscal year 1995 monies.
        Without an increase in the budget, the Commission will no longer be
    able to bring such timely information to the Congress. At its current
    funding level, it has only limited ability to collect necessary data,
    support complementary policy analyses, or consult with relevant
    experts. It is for this reason that the Commission is requesting an
    increase of roughly $100,000 for this budget category. Even with this
    level of funding for outside contracts, difficult choices will have to
    be made among the potential studies and data collection efforts that
    were described in the Commission's appropriation request submitted to
    the Committee on Appropriations in February.
        The Commission's proposed budget for fiscal year 1998 reflects its
    effort to restrain costs while ensuring adequate funding to carry out
    an ambitious work plan. Given the importance that the Congress has
    placed on reforms in Medicare and Medicaid, and the degree to which
    Members and congressional staff turn to the Commission for analysis and
    advice, the Commission looks forward to a very productive year.
                                     ______

                         Additional Committee Questions
        Question. I would appreciate information on the potential impact of
    a freeze at the fiscal year 1997 level through the year 2002 on your
    agency's mission as well as staffing levels and any other relevant
    details you can provide.
        Answer. As noted in my statement, the Commission's work has already
    been constrained significantly by the 30 percent reduction in our
    fiscal year 1996 budget. We responded to this cut by streamlining
    operations but primarily by eliminating all funding for outside
    research contracts.
        This action has permitted us to continue meeting the immediate
    needs of the Congress for advice in the development of legislative
    options and the evaluation of alternative policies. But it has meant
    that we can no longer develop new sources of data or invest in longer-
    term analyses that provide the foundation for our work. Such investment
    in data and analytical work in years prior to our major funding
    reduction in fiscal year 1996 put us in a strong position to advise the
    Congress during current deliberations on restructuring Medicare. A
    five-year freeze at our current funding level would compromise the
    future availability of information that the Commission and the Congress
    have come to rely on in reshaping Medicare policy. Let me provide two
    examples of how the Commission's work would be affected.
        The Commission has had a tradition of investing in studies on key
    issues of interest to the Congress that could elevate the debate from a
    discussion of anecdotes to a more systematic examination of an issue.
    The most recent example is the Commission's survey of Medicare
    beneficiaries' access to care in Medicare managed-care plans, the only
    existing national survey on this question. In discussing the results of
    the Commission's survey at a hearing last November, members of this
    subcommittee expressed interest in how access differs between Medicare
    beneficiaries in fee for service and those in managed care.
    Unfortunately, there is currently little reliable information to make
    those comparisons. This information could be obtained by surveying
    beneficiaries about access and outcomes. Such a project would be a high
    priority for the Commission if funding were available. The additional
    cost of such a survey, however, would be around $600,000.
        The inability of the Commission to purchase private sector data
    provides another example of how further funding constraints will
    jeopardize Commission work. As the Congress considers ways to
    restructure Medicare to take advantage of innovations in the private
    sector, it becomes increasingly important to evaluate systematically
    what is occurring in the private sector, how it varies in different
    markets, what lessons are relevant to Medicare, and what the
    implications of various changes will mean for the Medicare program, its
    beneficiaries, and taxpayers. An example of the type of data needed for
    this purpose is data to compare Medicare payments with those of private
    payers. Prior to our reduced appropriation in fiscal year 1996, the
    Commission was able to purchase private sector data. It had conducted
    analyses each year that tracked payment changes in the private sector,
    as well as in the Medicare program. This work contributed to our
    understanding of how changes in the health care market were affecting
    Medicare. Without the modest increase requested for the Commission's
    fiscal year 1998 appropriation, we will face a third year in which we
    cannot purchase those, or other market-related, data. A five-year
    freeze would only exacerbate this problem.
        The impact of a freeze through fiscal year 2002 is shown in Figure
    1. In 1987 dollars, our current funding level is already the lowest for
    any year in which the Commission was fully operational (the 1987
    appropriation of $1 million was the start-up budget for the
    Commission's first year). Under a freeze, our appropriation would
    continue to fall in real terms, so that by 2002, it would be nearly 12
    percent below our current level and fully 42 percent below our peak
    funding level in fiscal year 1992.

    Figure 1.--Appropriation for the Physician Payment Review Commission in
                       1987 dollars, fiscal year 1987-2002

                                                                   Thousands
    Actual appropriations:
        1988..........................................................$2,886
        1989.......................................................... 2,669
        1990.......................................................... 3,361
        1991.......................................................... 3,209
        1992.......................................................... 3,631
        1993.......................................................... 3,352
        1994.......................................................... 3,269
        1995.......................................................... 3,187
        1996.......................................................... 2,174
    Projected appropriations under a freeze:
        1997.......................................................... 2,367
        1998.......................................................... 2,310
        1999.......................................................... 2,254
        2000.......................................................... 2,199
        2001.......................................................... 2,145
        2002.......................................................... 2,090

    Note: Values are adjusted for inflation using the gross domestic product
    deflator. Projected values for fiscal year 1998-2002 assume a freeze at
    the fiscal year 1997 level.

        A 5-year freeze would not only eliminate our capacity to
    gather or purchase new data; it would further constrain
    Commission resources for computer analysis and likely lead to
    staffing reductions at a time when congressional requests for
    assistance are at an all-time high. I am particularly concerned
    about losing the highly skilled professional staff whose
    analytical work make it possible for the Commission to provide
    timely advice to the Congress and its staff. A freeze of this
    length would both lead to some reduction in staff through
    attrition and make it more difficult to recruit if there was a
    position available because of salary constraints. It also would
    diminish our ability to appropriately reward staff for good
    performance, which is a key to retaining a strong staff.
        Question. I would be interested to learn whether investment
    in automation has improved the efficiency of your agency and
    any steps you have taken, or plan to take, to address future
    automation needs.
        Answer. The Commission has made several investments in
    automation over the past few years. Most recently, it upgraded
    its internal computer network and obtained access to the
    Internet. The Internet has proved to be a valuable tool for
    staff in obtaining data from other government agencies and
    private sector organizations, as well as for the Commission to
    reach others. We launched a website (www.pprc.gov) that allows
    the public to download certain publications, view transcripts
    from Commission meetings, and order publications on-line. This
    innovation saves both postage and printing costs while making
    Commission materials more immediately accessible to the public.
        Given the Commission's modest size and the nature of its
    work, it appears unlikely that future investments in automation
    will substantially change our already efficient operation.
                                    ------

                        UNITED STATES INSTITUTE OF PEACE
            Prepared Statement of Dr. Richard H. Solomon, President
        Mr. Chairman, members of the Committee, I appreciate this
    opportunity to review the fiscal year 1998 budget request of
    $11,160,000 for the United States Institute of Peace. Although the
    Institute could responsibly utilize an appropriation larger than it is
    requesting, we are mindful of the goal of federal deficit reduction.
    Thus, we seek only the same level of support for the Institute approved
    by the Congress for the current fiscal year. Our objective is to
    maintain stability in (the scale of) the Institute's programs, which I
    believe are a vital and unique component of our national efforts to
    meet the complex challenges of realizing our national interests and
    foreign-policy goals in the post-Cold War world.
                     the international security environment
        Today we are six years into a disorderly and often confusing era
    still defined by the fact that it is not the Cold War. Conflict among
    the major powers is in abeyance, although considerable uncertainty
    remains about the future of both Russia and China, which are in
    historic transitions. Our Cold War-era preoccupation with the global
    balance of nuclear terror has been replaced by concern with dozens of
    smaller conflicts and humanitarian crises and episodes of chaos,
    conflict and human suffering, from Bosnia to Burundi. These conflicts,
    often driven by ethnic and religious violence, offends our values and
    sometimes puts our national interests, or those of our allies and
    friends, at risk. Yet even as such problems mount, many governments--
    including our own--face fiscal constraints and preoccupations with
    domestic concerns. We seek to minimize the risks and resources
    committed to involvement in crises and conflicts around the world.
        Yet our own national interests demand that we remain engaged in
    global affairs. Our security may not be directly affected by national
    rivalries in Central Asia, a sarin gas attack in the Tokyo subway
    system, or the difficult transition to democracy in the former
    Yugoslavia, yet the cumulative effect of such sources of conflict
    abroad is to highlight the need for new approaches to managing
    international disorder. The human and material toll mounts daily, as
    measured by refugee flows, disease, starvation, and ethnic/religious
    strife, its savagery magnified in our consciousness by global
    television and other mass media and its destructiveness enhanced by
    easy access to modern weaponry.
        The international community has yet to fashion new organizational
    mechanisms and rules of engagement for managing political turmoil and
    humanitarian crises produced by failing nation states and ethno-
    religious conflict. Traditional diplomacy and the institutions which
    served us well during the Cold War have frequently proven ill-suited to
    meeting many of these contemporary challenges to order and security.
    The old approaches of negotiation, military balances-of-power, economic
    aid and disaster assistance may be less important to mediators today
    than a grasp of cultural history and dynamics for effective response to
    ethnically or religiously driven conflict. Scholars and statesmen alike
    seek new insights and tools to make conflict resolution and
    peacekeeping more effective and to understand the meaning of the
    worldwide revolution in information technologies for the conduct of
    international affairs. The next generation of American leadership, now
    at secondary and college levels of education, must be better equipped
    to meet the new and complex challenges of managing conflict in the 21st
    century.
                    the new challenges of managing conflict
        This all underscores the importance of the Institute's mandate to
    strengthen our national capabilities for resolving international
    conflicts without resort to violence. Today, we are all searching for
    new instruments and means to adapt to new realities. And if we have
    learned anything about international affairs in the years since the
    Cold War ended, it is that American leadership remains essential to
    global stability--not to say the protection of our own national
    interests abroad. The Institute's unique mission is to bridge the world
    of academia and that of public affairs in order to provide policymakers
    with a broader spectrum of choices between the extremes of doing
    nothing or pulling the trigger of U.S. military intervention. Success
    in preventive diplomacy, in ameliorating conflicts, and in conflict
    resolution means not only saving countless lives, but also saving U.S.
    taxpayer dollars. It makes good policy sense to place an emphasis on
    developing capacities to prevent conflicts from occurring, to mitigate
    conflicts and their consequences once they occur, and to devise ways of
    assuring the effective implementation of peace accords once negotiated.
                   heightened relevance of institute programs
        The United States Institute of Peace is making a difference in
    expanding these relevant yet underdeveloped national capacities. With
    each passing year since the end of the Cold War, we have found growing
    interest in the Institute's programs, publications and inventive
    approaches to diplomacy and conflict management from Congress and such
    Executive Branch agencies as the Department of State, the National
    Security Council, and the U.S. military as well as the international
    research community. The Institute is a cost-effective national center
    of innovation that is helping our country translate such concepts as
    ``preventive diplomacy'' and `international conflict resolution'' into
    an operational reality. The watchwords that give focus to our five
    program areas are: (1) innovation of new policy approaches; (2)
    application of new theories and approaches of conflict resolution
    through professional training programs and policy support work, and (3)
    education of the coming generations and the general public about the
    rapidly evolving changes in the nature of international affairs.
    A special example of our relevancy--``Virtual Diplomacy''
        As an example of the relevance of our work, I want to highlight the
    Institute's most recent effort to help the government explore the
    changing realities of international relations. On April 1092, the
    Institute convened a major international conference on the theme of
    ``Virtual Diplomacy: The Global Communications Revolution and
    International Conflict Management.'' This two-day forum brought
    together diverse private and public sector communities to explore the
    ways new telecommunications technologies are reshaping international
    relations, concepts of state sovereignty, opportunities for more
    effectively managing our foreign policy, and new possibilities for the
    prevention, management and resolution of international conflict.
        ``Virtual Diplomacy'' sought to identify how to improve government
    effectiveness in managing crises and emergency humanitarian operations
    and explored how public and private sector crisis management groups can
    better cooperate and coordinate their efforts. More broadly, we seek to
    catalyze new thinking about ways in which the Internet and other
    communications instruments of the age of the information revolution can
    be utilized to more effectively project our leadership abroad in the
    service of minimizing international conflict and realizing our
    interests in an increasingly interdependent world.
        The Institute's varied programs are at the forefront of analysis,
    education, and action in the field of international conflict
    management. Let me briefly outline the five integrated program areas
    through which we fulfill our congressionally chartered mission to
    assist the U.S. and the international community:
      --Policy assessment and development. The Institute's in-house array
            of experts, grant and research programs, and its ability to
            mobilize prominent specialists both nationally and
            internationally, forms an unmatched intellectual network that
            provides both real-time policy support and long-term
            perspectives to decision makers. The Institute acts as a bridge
            between the world of analysis and that of policy practitioners,
            applying geographic and topical expertise to policy-relevant
            issues, providing insights that give early warning about
            potential conflicts and crises, and facilitating efforts at
            preventive diplomacy.
      --Training foreign affairs professionals. The Institute's training
            programs continue to develop new approaches for training
            foreign affairs practitioners. Working with U.S. diplomatic and
            military personnel such as the National Defense University and
            the Peacekeeping Institute at the Army War College, we are
            helping these programs expand their negotiation and mediation
            skills and our armed forces adapt to new peacekeeping roles.
            Institute workshops are unique in bringing together foreign
            policy, military, international and non-governmental
            organizations who increasingly need to work together in
            managing crises and conflicts.
      --Education. Institute programs systematically educate both teachers
            and students at the secondary, undergraduate and post-graduate
            levels about the changing character of international conflict
            and the new fields of conflict prevention, management and
            resolution through seminars and public outreach programs.
      --Outreach. Through the use of print publications, radio, the
            Internet and other electronic means, the Institute is
            broadening public understanding of the nature of international
            conflicts and new ways of managing and resolving them.
      --Facilitation and dialogue. The Institute has been active in
            facilitating ``Track II'' dialogues (informal meetings) among
            parties to current or emerging disputes, or between private
            experts and officials in unofficial capacities to explore
            issues with the hope of laying the groundwork for ``Track I''
            or governmental negotiations.
                 highlights of the institute's current programs
        I want to accent the current relevance of our work by illustrating
    some of our practical activities in the areas I have just outlined. We
    have focused our modest resources on issues where we sense urgency and
    special national interest either in preventing conflicts or building
    peace in post-conflict situations. I will touch on Bosnia, East Asia,
    and Central Africa, as well as several other important new ventures.
    Reconciliation in post-conflict Bosnia
        I particularly want to highlight our efforts to support the U.S.
    government in building peace in Bosnia. To this end, the Institute has
    developed a range of activities that apply techniques and research
    developed over the past decade to the work of stabilizing the Bosnian
    peace processes and facilitating reconstruction of that society.
        At the heart of reconciliation efforts in Bosnia is the need to
    deal with the legacy of war crimes. Building on the Institute's
    previous landmark work on transitional justice, we are working with
    local authorities in Bosnia and the international community to help
    develop options to heighten the accountability of those guilty of war
    crimes. This accountability is essential to stabilizing the peace
    process. As part of our larger efforts in the area of Rule of Law, the
    Institute plans to convene this summer a roundtable on justice and
    reconciliation in Bosnia that will involve the ministers of justice and
    the interior of both the Federation and the Republika Srpska. That
    forum will make available to political leaders the Institute's work in
    this area and will also convene an international group of experts to
    help the Bosnians consider how to address, in a constructive manner,
    the thousands of war crimes cases that will not be dealt with by the
    international tribunal at the Hague.
        The Institute has also launched in Washington a Bosnia working
    group including both administration and non-administration
    representatives to discuss policy considerations that go beyond
    immediate operational issues. In its brief history, this working group
    has served to coordinate the development of policies by disparate
    groups and to keep key decision makers informed in an efficient and
    effective manner.
        In addition, the Institute's grant and fellowship programs are
    focusing on Bosnia and Balkan-related issues. Several prominent senior
    fellows are now doing research projects on such topics as community
    peace building efforts in ethnically divided communities, questions of
    reconstruction, and the impact of the ``Albanian question'' on
    stability in the Balkans.
        Institute training, outreach and education efforts have also
    focused on Bosnia. Our International Conflict Resolution Training
    Program (ICREST) has held two training sessions on the Balkans, and
    Institute staff have conducted four additional training sessions on the
    ground in Bosnia. Institute grants to promote reconciliation in Bosnia
    have involved training in conflict resolution skills for teenagers in
    Bosnia, Croatia, and Serbia, and in mixed Croat and Muslim communities,
    and the training of representatives of religious communities in
    approaches to more effectively resolve conflict. In order to avoid
    duplication of effort and promote collaboration among international
    organizations, the Institute has supported the development of an
    Internet-based electronic clearinghouse of information about activities
    in the region and a database of organizations pursuing conflict
    resolution in Bosnia.
        Finally, our Religion, Ethics and Human Rights program has been
    working with religious leaders in Bosnia to identify areas of
    cooperation and to initiate programs that will address the inflammatory
    language which religious groups use in describing each other and which
    militates against a culture of tolerance.
    Managing and preventing conflict in East Asia
        The Institute also has been active on key problem areas in the
    Western Pacific which hold the potential to erupt into major conflict:
    the Korean Peninsula, the South China Sea, and the China-Taiwan
    dispute. The Institute's ongoing working group on Korea has provided
    support to the administration since 1993, and to the Korean Energy
    Development Organization (KEDO), in efforts to design and implement the
    October 1994 Agreed Framework which froze North Korea's nuclear weapons
    program. A working group ``Special Report'' issued in 1994 played an
    important role in the policy debate leading to the nuclear accord; two
    subsequent reports have also contributed significantly to the policy
    community's understanding of this complex situation. In addition,
    periodic meetings of the working group with senior administration
    officials and also with KEDO officials--most recently, just last
    month--have supported their efforts to realize the nuclear accord and
    craft approaches to reducing the risk of conflict and fostering
    reconciliation between North and South on the Korean Peninsula. The
    Institute has also concentrated on the security implications of the
    agricultural crisis in North Korea, and is now seeking to identify
    confidence-building measures that may lead to a reduction in the
    massive conventional military forces deployed on both sides of the
    Demilitarized Zone. We also are exploring the development of a ``Track
    II'' dialogue with North Korea on approaches to arms control and
    reduction.
        The Institute has also focused on other potential Asian flash
    points. The unresolved territorial disputes in the South China Sea over
    the Spratly Islands have been the subject of an Institute working
    group, research efforts, and a ``Special Report.'' In addition,
    festering territorial disputes and sovereignty questions, particularly
    the China-Taiwan question and territorial issues in the East China Sea
    and Sea of Japan, pose serious threats to regional stability and to
    U.S. interests. In response to concern in the policy community, the
    Institute is expanding its focus on these disputes and their
    implications for U.S. interests in the Asia-Pacific, and is seeking to
    craft new political approaches which could ameliorate these problems.
    Ongoing ethnic conflict Central Africa
        The Institute has also concentrated efforts on the horrendous
    ethnic conflict in the Great Lakes region of Central Africa (e.g.
    Rwanda, Burundi, and Zaire/Congo) in the areas of transitional justice
    and in assessing the impact of the current turmoil in Zaire/Congo on
    its nine neighbors in the region.
        In regard to Zaire/Congo, earlier this year the Institute, together
    with the State Department, organized a day-long symposium on the
    situation facing that country in the transition to a post-Mobutu
    government. That session provided an opportunity for U.S. government
    officials to hold a dialogue with international scholars and analysts
    and policymakers from Europe and Africa. In addition, that forum was
    followed by more detailed policy discussions at the State Department
    aimed at building international consensus on how to manage the
    transition in Zaire/Congo.
        As part of our Rule of Law Initiative, the Institute has been
    involved in Rwanda and Burundi with the key issue of transitional
    justice, i.e., how societies emerging from repression or civil war deal
    with the legacy of past war crimes and other human rights abuses.
    Shortly after the 1994 genocide in Rwanda, the Institute assembled
    fifty U.S. and UN officials, leading scholars, experts on war crimes
    and international law, the Rwandan Prime Minister (by phone) and the
    chief prosecutor for the UN war crimes tribunal for the former
    Yugoslavia for a major conference on ways of dealing with the legacy of
    violence in Rwanda. Subsequently, an Institute Senior Scholar worked
    with the Rwandan President to devise a plan for accountability after
    the genocide (including the drafting and enactment of the genocide
    legislation), and recently the Institute, with concurrence from the
    State Department, assumed an expanded role in assessing and advising on
    the implementation of the genocide legislation in Rwanda and in
    coordinating external assistance to that country.
        The Institute has also been involved in Burundi. In September 1996,
    the Institute co-sponsored a day-long conference with the State
    Department to help assess policy options to avert the kind of genocide
    experienced in Rwanda, and it has provided funding for the Burundi Open
    Forum, a preventive diplomacy effort designed to avoid a repeat of the
    violence that wracked Rwanda.
    Other new institute initiatives
        European/Russian Security: The Institute has convened a working
    group to examine in depth the consequences of NATO expansion. Former
    National Security Advisor Brzezinski initiated the first session of
    this group on Capitol Hill with a presentation about the Russian
    dimensions of this issue. Subsequent sessions have focused on the NATO-
    Russia Charter and the prospects for NATO expansion after this summer's
    first round. Future sessions will focus on Central Europe, the Baltic
    Republics, the Ukraine and NATO itself. This working group is chaired
    by Ambassador Max Kampelman, vice chairman of the Institute's Board of
    Directors.
        Afghanistan: Having done extensive work on conflict resolution
    processes in other conflicts, including Cambodia, Somalia, Angola and
    Lebanon, the Institute organized a small working group to consider
    whether any of the lessons from these conflicts would be applicable to
    the current situation in Afghanistan. With the ultimate objective of
    making a determination as to whether a negotiated settlement to the
    Afghan conflict is possible at this time (as opposed to a victory on
    the battlefield), the Institute has convened two groups of experts:
    some of the more prominent Afghan experts in the United States, and
    specialists on the four conflicts mentioned above. Four sessions have
    been held in 1997.
        Central Asia: The five states of Central Asia represent a serious
    source of potential regional instability, both concerning their
    internal relationships and also concerning their relationship with the
    former Soviet Union. To look at possible flash points in Central Asia,
    with the objective of generating recommendations for defusing or
    resolving them, the Institute convened a seminar in May.
    Training professionals in conflict management skills
        Finally, I want to highlight the Institute's critical work on
    conflict resolution and negotiation skills training for foreign affairs
    professionals. This activity continues to be our fastest growing area
    and draws heavily on our substantive policy work. The combination of
    substantive work and training is one of the Institute's distinctive
    characteristics.
        To respond effectively to the new requirements of peace operations
    and diverse international negotiating opportunities, effective
    policymaking and planning must be supported by inventive diplomatic
    methods. Increasingly, there is a need for supplemental efforts beyond
    traditional diplomatic instruments. A whole new strata of non-
    governmental actors is playing a larger role in international affairs,
    while some traditional actors and institutions, particularly the
    military, are finding themselves in non-traditional roles such as
    managing peacekeeping operations, as in Somalia, Haiti and post-Dayton
    Bosnia. The Institute's training programs are in growing demand to help
    the military adapt to new missions and to help governments and non-
    government actors cope with new realities. I have already touched on
    some of our efforts to train these new actors in Bosnia.
        I particularly want to highlight the Institute's collaboration on
    training and other areas with the U.S. Army's Peacekeeping Institute
    (PKI). The Institute of Peace was called on to assist in writing the
    negotiation and mediation section of the 1995 Joint Commanders Field
    Handbook. Subsequently, the Institute has expanded its collaboration
    with the PKI, holding three annual ICREST training seminars on managing
    conflict in peace operations. Military staff colleges are using the
    Institute's materials on peacekeeping operations, and the Institute has
    also begun to work with foreign militaries. The Institute has also
    designed and conducted three training seminars for senior officers from
    Latin American countries at the request of the Inter-American Defense
    College, with whom we are planning additional programs.
        In fulfillment of its mandate, the Institute has reached out beyond
    professionals to educate the next generation through our teacher
    training and student enrichment programs. Over the past four years, 120
    secondary school teachers from over 40 states participated in Institute
    summer training seminars, while undergraduate faculty seminars have
    attracted more than 75 professors from 25 states in the past three
    years. And the Institute's National Peace Essay Contest has involved
    upwards of 7,000 secondary school students annually in grappling with
    the complexities of decision making on matters of war and peace in
    international affairs today.
                                   conclusion
        Mr. Chairman and Members of the Committee, in closing I want to
    stress that the Institute deeply appreciates congressional support for
    its work, and understands full well the imperative of fiscal prudence.
    We have devised our budget submission with that objective in mind, just
    as we are managing the Institute so as to gain the maximum programmatic
    impact from our modest annual appropriation.
        As the committee deliberates on our budget request, I would again
    stress the Institute's real-time efforts to prevent, ameliorate, or
    resolve conflict such as those in Bosnia, Korea and Central Africa
    which I have outlined. It is evident that it is much less costly and
    risky for our nation to help prevent or mitigate the effects of
    conflict than to contend with the devastating and unpredictable
    consequences of a raging crisis. As Father Ted Hesburgh, a member of
    our Board of Directors, stressed to you several years ago, ``If the
    Institute of Peace helps prevent just one war or helps resolve one
    humanitarian crisis peacefully, it will justify its mandate and its
    financial support many times over.''
        I believe the United States Institute of Peace has grown to be a
    highly valuable, cost-effective center for action as well as research,
    training and policy support for practitioners in the conduct of
    America's international relations in a world still burdened with
    conflict. We have organized ourselves to make maximum use of our
    capabilities, to draw effectively on the expertise and resources of
    others where appropriate, and to distribute widely the results of our
    work. It is fulfilling the promise that Congress entrusted in us when
    it established the Institute in 1984.
                                     ______

                         Additional Committee Questions
          negative impact of a funding freeze through fiscal year 2002
        Question. Please provide information about the potential impact of
    a freeze at the fiscal year 1997 level through the year 2002 on your
    agency's mission as well as staffing levels and any other relevant
    details you can provide.
        Answer. A freeze of our appropriation at the fiscal year 1997 level
    through fiscal year 2002 would seriously impair the Institute's ability
    to fulfill its Congressionally-mandated mission. Such a freeze would
    (1) eliminate any opportunity for development of Institute programs
    beyond current levels; and (2) reduce current program activities
    because of the need to absorb the effects of inflation over the next 5
    years.
        Level funding for past six fiscal years: From fiscal year 1992
    through fiscal year 1997 the Institute's appropriations have been
    limited almost to the same degree as if a freeze had been in force. Any
    consideration of a future freeze through fiscal year 2002 should,
    therefore, take into account the fact that the total cumulative period
    of freeze-like effects would cover a total of 11 fiscal years--from
    fiscal year 1992 through fiscal year 2002.
        Since fiscal year 1992, the Institute's level of appropriations has
    varied slightly between $11 million and $11.5 million. The Institute's
    one-time increase to $11.5 million (about a 5-percent adjustment) in
    fiscal year 1995 was awarded to fund only part of a proposed expansion
    of the Institute's Education and Training Program. Consequently,
    appropriations during the past five annual cycles have neither (i)
    included any adjustments for inflation nor (ii) allowed for any
    additional program development beyond that supported by the $11.5
    million appropriation.
        The Institute has accepted these limitations to demonstrate its
    voluntary support for the objective of federal budget deficit
    reduction. Yet, during that time period, Institute services have been
    called upon at an increasing rate. The market for its programs has
    grown in proportion to the growth in its reputation for (i) prompt and
    effective steps on urgent issues related to resolution of international
    conflicts, and (ii) its educational work supporting teaching about
    world conflict to American students and the provision of training to
    foreign affairs professionals about approaches to managing
    international conflicts.
        National need for more development of Institute programs: In
    attempting to meet the domestic and international demand for Institute
    services, Institute programs have continued to grow and mature during
    these six years of basically level funding. During this period the
    Institute has maintained, in its annual budget submissions to Congress,
    that it can use larger appropriations effectively and responsibly to
    enhance American interests in peace and security throughout the world.
        Having been constrained for the past six years, the Institute now
    can address the period through fiscal year 2002 and state more strongly
    than ever that it could utilize more funding to even greater benefit in
    pursuit of its legislated mission. The Institute estimates that modest
    increases in funding of about three percent per year beyond the rate of
    inflation would enable it to realize its national mission more fully at
    a time when the world continues to be plagued by newly developing
    violent conflicts in places like Zaire (Congo) and old settlements that
    are at best shaky (as in Bosnia) or are in danger of falling apart (as
    in Cambodia).
        Additional funds would be used for such activities as a significant
    expansion in the rule of law initiative dealing with accountability for
    war crimes and transitional justice in places like Bosnia and Rwanda;
    further expansion of the education and training program along the lines
    proposed to Congress in fiscal year 1995; greater efforts at Track II
    conflict-resolution dialogues and facilitations; restoration of grant
    and fellowship programs to prior levels; and expansion in public
    outreach through the use of radio, the World Wide Web, and other
    electronic media.
        Significant program erosion from inflation: A five-year freeze
    holding the Institute's appropriation to the $11,160,000 level
    appropriated for fiscal year 1997 could seriously limit the Institute's
    capacity to carry forward its Congressional mandate. If inflation
    during this period is assumed to average 3 percent annually, the total
    cumulative reduction in the Institute's purchasing power across-the-
    board for this period would be about 16 percent.
        Damaging as would be a budget reduction of one-sixth, the impact of
    inflation would be compounded even further if one differentiates
    between the effects on (i) the Institute's fixed non-discretionary
    costs (such as personnel and rent) and (ii) its variable discretionary
    costs (such as travel, service contracts, equipment, grants,
    fellowships, scholarships, etc.). The Institute's first response to
    continuing budget erosion from cost increases would be to maintain the
    level of personnel and other non-discretionary expenditures (the
    rationale being to preserve its institutional infrastructure and work
    for a restoration of funding at some future point). It would
    accordingly be forced to reduce expenditures for the discretionary
    items listed above. If the full impact of a cumulative inflation of 16
    percent were allocated to discretionary costs alone, the available
    purchasing power for such expenses would be reduced by one-quarter to
    one-third.
        Faced with such a dramatic impact, the Institute would need to
    contract a number of its programs as well as consider reductions in
    personnel. The precise nature of such cuts would depend on further
    review and consultation with the Institute's board of directors. In
    this process the Institute would conduct an assessment of personnel
    needs and could be forced to reduce its FTE level by from 10 to 15
    percent from the level of 59-60 it judges to be the minimum needed to
    operate the Institute effectively down to the range of 50 to 53--a step
    that would significantly restrict Institute operations and force
    cutbacks in Institute programs.
        Apart from considering possible program contraction as described in
    the preceding section, the most basic feature of the Institute's
    current program planning is its objective of seeking to maintain a
    stable base of funding and program activity for its operations during
    the coming five years:
      --Program stability is important so that the Institute can sustain
            the initiatives and maintain the degree of flexibility and
            innovation that it has developed in recent years (e.g. our work
            on North Korea, Kashmir, Sudan, and Bosnia). Marginal budgetary
            reductions over time will gradually reduce the Institute's
            ability to respond to new challenges in international conflicts
            with policy assessment activities and Track II facilitation
            dialogues in support of administration and Congressional needs.
      --Further development and refinement of the Institute's education and
            training activities requires a firm base of funding from which
            to respond to the interests of its Congressional sponsors and
            administration collaborators, and to strengthen our educational
            enrichment activities addressing questions of international
            conflict management from high school through graduate and
            professional training--activities that support President
            Clinton's stated goals of giving education a central role in
            federal programs.
      --The transfer to the Institute in late 1996 of jurisdiction over a
            tract of federal land on which to build a permanent
            headquarters further underscores the need for program
            continuity.
                       constraints on the federal budget
        The Institute is mindful and supportive of the goal of federal
    budget deficit reduction. It has sought to develop annual budget
    requests that are fully consistent with this goal and has crafted its
    programs to ensure the efficient use of resources and a focused and
    disciplined setting of priorities.
        In considering the Institute's appropriation request, we hope that
    you will consider the fact that our effectiveness in fulfilling our
    Congressional mandate can produce significant cost savings for the
    nation--including smaller expenditures for military interventions,
    lower risks of combat casualties, and reduced conflict-related
    humanitarian assistance. As Institute board member Father Theodore
    Hesburgh has noted, when testifying before the House Appropriations
    Subcommittee for Labor, Health and Human Services, Education and
    Related Agencies, ``If the Institute prevents just one war or helps
    resolve one humanitarian crisis peacefully, it will justify its budget
    many times over.''
        In this context, the Institute could responsibly utilize more than
    the amount it is requesting, but at a minimum it seeks to maintain a
    stable level of funding in order to continue to serve its policy
    support and professional training purposes.
        To maintain a stable level of operations it is necessary to take
    into account the effects of inflation. Even a low rate of inflation
    reduces overall capability if enough time is allowed to pass without
    appropriate compensatory measures being taken. Yet the Institute has
    not requested any recognition of inflation in its budget requests since
    its current level of funding was established about five years ago and
    hence has seen its funding erode in real terms from year to year.
        Consequently, the Institute proposed in the fall of 1996 that the
    President's budget request include $11,495,000 for our programs, an
    amount that would have represented an increase of 3 percent above the
    Institute's appropriation for fiscal year 1997 and within a few
    thousand dollars of the amount appropriated for fiscal year 1996.
        Since the President's budget request does not include this increase
    for inflation, the Institute has set its own request at the $11,160,000
    level, as described above, in order to be consistent with the
    President's level. At the same time, the Institute believes that the
    degree of program stability that the Institute needs cannot be assured
    over time without some allowance for inflation. A single year, by
    itself, is unlikely to present a serious problem; but the cumulative
    effects over several years of level funding can be considerable. As
    described above, the effect in fiscal year 1998 will be a slow down in
    the growth of the Institute's education and training activities and a
    reduction in grants and fellowships and other research activities that
    will significantly constrain the Institute's capacity to respond to the
    changing world situation.
        On behalf of the board of directors of the United States Institute
    of Peace, I want to thank you for OMB's Passback Guidance allocating
    $11,160,000 to the Institute and for OMB's support for Institute
    programs. As you know, this allowance maintains the Institute at the
    fiscal year 1997 enacted level but is $335,000 less than the
    $11,495,000 that the Institute included in its submission to OMB. The
    Institute's higher figure was designed to cover some of the increases
    in Institute costs due to inflation.
        None of OMB's allocations of budget authority to the Institute
    during the last six fiscal years have directly recognized the effects
    of inflation; none, in fact, have exceeded the prior year's
    appropriation. Yet cost increases during this period have included, for
    example, (1) salary adjustments for cost of living and locality
    increases totaling over 17 percent, and (2) increases in printing costs
    of about 7 to 8 percent per year (in fiscal year 1995 alone, the costs
    of paper for our publications increased by 30 percent).
        For these reasons we have seriously considered submitting a formal
    appeal to the Institute's fiscal year passback, but after further
    review, we have decided not to press a matter that for 1 year would
    amount to $335,000. We did, however, wish to call to your attention the
    cumulative effect of a straight-line budget and lay the basis for a
    continuing dialogue on this matter.
              improved efficiency through investment in automation
        Question. Has investment in automation improved the efficiency of
    the Institute? What steps has the Institute taken or does it plan to
    take to address future automation needs?
        Answer. The Institute has been a leader among federal agencies in
    automating the management and operation of its various analytical,
    educational, training, and administrative activities. In order to
    assure that public funds are used as efficiently as possible, and to
    make our limited appropriation work most effectively in fulfilling our
    mission, the Institute's policy is to promote automation of as much of
    its work as feasible.
        In its fiscal year 1998 budget request to Congress the Institute
    described how it is using information services technology and related
    automation efforts both to improve the efficiency of its internal
    operations and to explore how automation can strengthen the Institute's
    outreach to its various audiences in the U.S. and abroad. We believe
    that our efforts in this area could serve as a model for other publicly
    funded organizations.
        Overview of automation efforts--1991 through 2002: Since 1991 the
    Institute has made a series of well planned and steady investments in
    office automation. A plan adopted in 1991 set the goal of supporting
    every staff member, fellow and research assistant with the computer
    tools needed to:
      --communicate internally and with the world at large;
      --create materials for publication of books and reports as well as
            distribute such materials electronically to targeted lists of
            interested individuals and organizations;
      --use electronically-maintained client lists to build new working
            groups and communities interested in supporting the Institute's
            mission;
      --plan, execute and track events and program participants (including
            grant, fellowship and essay contest participants);
      --track expenditures through the various Institute programs and
            departments; and
      --make available to the public the Institute's publications and its
            collection of library reference materials and other resources
            on international conflict management.
        In this process the Institute has sought to (1) identify tasks or
    activities that would benefit from automation, (2) set objective goals,
    and (3) use standard commercially-available off-the-shelf hardware and
    software whenever possible. The Institute's policy is to purchase
    products or services that have a track record for ease-of-use,
    reliability, and long-term economy. Outsider observers of our work
    frequency remark on the high quality information systems we have
    established at a modest investment of our resources.
        The information system goals set in 1991 were met by early 1995. In
    1996 the Institute began to evaluate the results of these efforts in
    order to produce a new information systems plan by the end of fiscal
    year 1997. This new plan will guide system development, acquisition,
    maintenance, and training priorities through fiscal year 2002. It will
    also contribute significantly to the Institute's development of a new
    permanent headquarters building next to the Mall in Washington, D.C.--a
    building which the Institute intends to build and equip in a way that
    will take maximum advantage of the ongoing technological revolution in
    telecommunications, information, and other automated systems in
    fulfillment of our legislated mandate for public and professional
    education, training and research support.
        Accomplishments to date: The move to increased automation has
    affected all areas of the Institute's operations:
        Communicating within and outside the Institute--e-mail: By early
    1992, the Institute had installed an e-mail network linking all of its
    offices, and file and database servers to assist in the creation and
    exchange of electronic information and Internet-accessible electronic
    mail applications on all computers used by staff, research assistants,
    and fellows.
        Publishing Institute products: Investment in automation has
    substantially improved the efficiency of the Institute's publications.
    Recognizing that the publishing world of 1997 is primarily digital in
    nature, the Institute maintains an in-house, digital desktop publishing
    operation. Use of digital technology allows the Institute to create and
    produce high quality publications in a timely, efficient, and cost-
    effective manner. Primary vendors--printers, typesetters, and
    designers--also work in the digital world. Our in-house capability
    facilitates faster turnaround of projects and flexibility in creating
    new and appropriate products that publicize the Institute's work. The
    Institute also uses the Internet/Web as described below, to disseminate
    its publications.
        In terms of sales, all Institute distribution centers are fully
    automated. Customer service and book order information is maintained on
    an automated system that provides us with a great deal of information
    about our varied audiences and their interests.
        For direct mail, the use of computers has improved efficiency in
    several ways:
      --Work is performed faster.
      --More work can be done in-house rather than contracted out.
      --Tracking publications and recalling information is much more
            efficient.
        Reaching special audiences--the Institute's Client List: The
    Institute's Client List database is the heart of the Institute's
    operations. To save money on mailing costs and to manage information
    about Institute clients, the Institute brought its mailing list in-
    house in 1992. After consultations about applicable categories for
    identifying and grouping contacts, the mailing list became a Client
    List, which now offers a variety of ways to cross check and determine
    client interest and history of participation in Institute events as
    well as receipt of our publications. By electronically manipulating
    this list, the Institute can customize groupings of people interested
    in Institute work and target them through a variety of media including
    print, fax, and electronic mail.
        The short-term result of bringing the mailing list in-house was to
    reduce redundant mailings by two-thirds. The long-term result of
    developing a more substantive client profile database from the mailing
    list is that all of the Institute's program work has been strengthened
    by a greater capacity to:
      --identify experts in the field of conflict resolution, in quick
            response to requests from other federal agencies, the media,
            academics, and the general public seeking expert advice in a
            broad range of categories.
      --assemble working groups of qualified experts to advise policy
            officials of alternative approaches to managing changing
            events.
      --profile the Institute's audiences to aid in the design of programs
            and publications that better serve their interests.
        Scheduling events--the Institute calendar: The Institute is able to
    organize high-quality meetings of diverse communities with minimal lead
    time. Its automated information systems provide the means for a small
    staff with limited resources to respond to a growing need for Institute
    services, particularly for policy relevant meetings. The Institute's
    primary automation vehicles are its Client List, Calendar, and its
    participant handling databases. These applications generate an
    automatic series of tasks, deadlines and forms that must be completed
    in order to comply with federal purchasing regulations and at the same
    time organize the events that comprise much of the Institute's work.
    Procedures and forms that took weeks and months of training to
    understand and process, now take minutes. The electronic Calendar has
    saved the Institute months of man-hours and helped improve the quality
    of Institute events.
        In 1994, in response to the growing number of Institute-sponsored
    events, the Institute began developing an automated event planning
    application to improve efficiency, circulate pertinent information, and
    track costs. This unique software application was designed, programmed
    and implemented by Institute staff. It was installed on an Institute
    server and was in general use by 1995. The participant handling
    database works in conjunction with the event planning features of the
    Calendar to arrange for participant travel and honoraria and other
    logistical arrangements. The Client list insures the delivery timely
    and targeted notices informing interested groups of upcoming events.
    Staff use of the Calendar, participant handling database, and Client
    List has helped the Institute make more efficient use of limited staff,
    reduce emergency spending, and consequently the number of Institute-
    sponsored meetings has nearly doubled since 1994.
        In addition the calendar also provides the automated means to
    prepare administratively for the arrival and orientation of new
    employees. The Institute also manages various competitive programs
    (e.g., fellowships, grants and essay contest) by using database
    applications that have been customized by Institute staff.
        Tracking expenditures: Since most of the Institute's non-personnel
    expenses are related to events and products, the Institute Calendar is
    used to automate purchase requisitions and work-orders.
        By following steps automatically prompted by the Calendar, any item
    or work that results in a purchase is entered, justified, and processed
    either as an internal work order or as a purchase request that goes
    through standard government purchasing procedures. In this way
    individual programs and departments can track, in real time, all of
    their requests for purchases or work against their annual budget and
    work plans and thereby save days of record keeping and more accurately
    budget future activities and events.
        The Institute uses a variety of automated accounting systems to
    develop Institute budgets, to manage its endowment accounts, and to
    interface with GSA for the accounts which it maintains.
        Expanding media outreach: To fulfill its mission, the Institute
    must attract audiences willing to listen, participate, and advance the
    Institute's work. The Client List provides the Institute's principal
    outreach vehicle for building bridges to diverse communities. Although
    much work remains, its development has provided a focal point for the
    Institute's effectiveness in supplying client services.
        Even so, the Client list is only the starting point of our
    community development efforts. Since 1992, the Institute has
    experimented with various forms of outreach other than publications to
    reach its target audiences. These include radio and TV broadcast, video
    production, fax lists, e-mail lists and web site development. The
    Institute's recent conference on ``Virtual Diplomacy'' demonstrated the
    effectiveness of online electronic tools in attracting the attention of
    a broader domestic and international audience to the Institute's work.
        The Institute is beginning to gain the experience needed to assess
    the most efficient and effective manner in which to disseminate its
    work through radio broadcasts, electronic mailing lists, fax and e-mail
    on demand, and documents and databases accessible though the
    Institute's web site (www.usip.org). Our long-term goal is to have the
    means to produce broadcast or online programs that draw simultaneously
    from a diverse community of experts and interested parties, synthesize
    associated ideas, and disseminate in real time to audiences who are
    most affected by and interested in a particular issue.
        Automating the library: In 1995, the library initiated plans to
    replace its outdated hardware and software as funding became available.
    It was guided by a need to take advantage of new computer tools and
    networks to better facilitate and support the effective provision of
    information services and efficient operations.
        The goals of the library's information systems plan were to:
      --expand public access to information resources in international
            conflict management;
      --facilitate communication and delivery of services to Institute
            staff and fellows at the desktop via the Institute's network
            resources; and,
      --integrate library automation plans, to the extent possible, into
            the Institute-wide information system.
        In early 1995, the library began to upload to the Institute's
    Internet site files (i) containing new titles added to the Institute's
    book collection; (ii) describing library operations and services; and
    (iii) providing links to World Wide Web resources. The library uses
    these tools to support Institute-wide programs and to promote knowledge
    about peacemaking and conflict resolution to a ``virtual'' audience of
    practitioners, researchers, and citizens at home and abroad, and
    encourages them to direct their research inquiries to the Institute's
    staff.
        The library staff maintains and develops the Library & Links pages
    () on the Institute's web server. The
    library will continue to focus a substantial amount of its effort on
    developing innovative services and access to resources in international
    conflict management via the Internet.
        To further automate operations in late 1995, the library acquired a
    Macintosh-based client/server integrated library system (ILS) composed
    of five core modules: acquisitions, serials management, cataloging,
    circulation, and the online public access catalog. The implementation
    of this system is scheduled to be completed by the end of the 1997.
        Over the last few years, the library has been subscribing to an
    increasing number of electronic information services, resulting in a
    growing need for server space on the Institute-wide network. To
    alleviate this situation, Institute staff will install a network server
    in mid-1997 for the ILS and the library archive of electronic
    documents.
        By February 1996, the hardware and software upgrade in library
    staff offices, and basic training in Macintosh for library staff was
    completed.
        In March 1996, the library switched to a new Internet service
    provider which offered a low cost dial up connection with technical
    support for unlimited access to the Internet. At the same time, the
    library acquired new software for navigating the Internet via a
    graphical browser. These changes significantly simplified and enhanced
    the library staff's access to external electronic resources in support
    of Institute-wide information needs.
        In early 1997, a new Macintosh computer for Institute-wide use was
    configured to provide quick and easy access to the Internet, enhancing
    navigation and facilitating the use of the Internet for the research
    and information needs of Institute staff and fellows. Prior to the
    installation of this public use computer, Institute staff were using
    one of the office Macintoshes in the library for accessing the World
    Wide Web. The availability of the Internet in the library has exposed
    Institute staff and fellows to the World Wide Web, and enhanced the
    information sources available to them at the Institute.
        Also in early 1997, library staff oversaw the installation of a
    jukebox with CD-ROM drives, and handled the installation of various
    bibliographic and full-text databases in CD-ROM format. The number of
    CD-ROM products increased significantly in 1997, thus helping to avoid
    the need for costly searches on commercial databases. The library also
    continues to subscribe to and utilize commercial databases such as
    Lexis/Nexis and Dialog to initiate and fulfill interlibrary loan
    requests among participating libraries. This service is of importance
    to the Institute and to other libraries with limited funds for
    collection development, recognizing that access is becoming more
    important than ownership in meeting the information needs of many
    library users.
        Training staff for automation: Neither sensible hardware and
    software acquisition nor creative design and program implementation can
    insure that Institute investments in automation will produce the
    desired results. Working with and training staff is key to maintaining
    efficient and effective systems. Recognizing this need since 1993 the
    Institute has gradually implemented a formal computer training program
    to ensure that its technological investments translate into productive
    staff work skills. Each year the Institute teaches new staff, fellows,
    research assistants and interns how to use its information services.
    Since the start of the Institute's formal training programs, the amount
    of time spent on technical assistance problems with new staff has
    dropped more than 50 percent.
        In mid-1996, the Institute's library designed and began to offer a
    one-hour hands-on individual training session on ``Doing Research on
    the Web Using Netscape'' tailored to the work of the Institute. The
    goals of the training session were to introduce the World Wide Web as a
    research tool to retrieve information in subject areas of interest to
    Institute staff and fellows, and to provide hands-on experience in
    navigating the Web, retrieving information, and searching for Web
    resources relevant to the work of the Institute.
        Increasing overall efficiency: In summary, the adoption and use of
    new information technologies to automate Institute procedures as
    described above has improved the Institute's efficiency by helping it
    to:
      --arrange events in a way that avoids time conflicts and duplication;
      --better manage its finances;
      --better manage is library resources;
      --rapidly develop and produce new publications;
      --build bridges among policymakers, academics, NGOs, the business
            community, philanthropic organizations, and the general
            public--through use of the client list to better target
            communications;
      --communicate the results of our work to increasingly larger and more
            influential and international audiences--through publications
            of books and reports and material available on the Institute's
            web page;
      --more rapidly marshal expertise among Institute clients in response
            to the needs of American policymakers and diplomats; and
      --assess and promote new opportunities to resolve international
            conflict through non-violent means.
        Addressing future automation needs: In the future the Institute
    expects to continue developing the role of automation in the same
    vigorous manner as described above. In so doing, during the next five
    years through fiscal year 2002 it will pursue two parallel lines of
    activity:
      --developing an information systems plan to address its future needs
            for information systems infrastructure, information management
            procedures and acquisitions of hardware and software.
      --planning the construction of a new permanent headquarters building
            next to the Mall in Washington, D.C. that will incorporate many
            elements of the revolution in information and
            telecommunications technology.
        The planning for information systems will feed into the planning
    for the headquarters building and help define the technological
    features that will best serve the Institute's future needs.
        Information systems planning: The planning goals will be to (i)
    provide a blueprint for the Institute's electronic infrastructure, (ii)
    outline Institute policies regarding acquisition, maintenance, and
    disposal of software and equipment, and (iii) establish user skill
    requirements. The plan will simultaneously support each program's needs
    in light of the Institute's mission and prepare the Institute to
    integrate and to exploit increasingly powerful automation tools. The
    Institute believes that keeping up with the state of the art in
    automation will be a necessity if the Institute is to maintain its
    current work pace at roughly its present funding and staffing levels.
        As currently projected, the first step in the planning process will
    be an audit in four areas:
      --A review of personnel that will cover intended and actual job
            duties, job performance objectives, reporting relationships,
            and use of Institute resources and procedures.
      --An examination of processes that will focus on the mechanics of how
            work and information flows through the Institute, how
            interaction takes place with those outside the Institute, and
            what procedures and resources are used to facilitate both of
            these processes.
      --A comprehensive inventory of hardware and software that will
            include the Institute's existing computer and networking
            infrastructure, the kind of capabilities they provide, and the
            capabilities still needed.
      --An identification of data involving where, in what form, and by
            whom information is stored and referenced at the Institute. An
            attempt will also be made to determine where information stored
            in different forms or places overlaps as a way of identifying
            where gains in efficiency and effectiveness might be achieved.
        After the audit is completed, more detailed planning will be
    pursued regarding continuing development of the Institute's program for
    automation and related implementation measures.
        Building a permanent headquarters for the Institute: In 1996
    Congress and the President enacted legislation transferring to the
    Institute a parcel of land located at 23rd Street and Constitution
    Avenue in Washington. The U.S. Navy has since transferred jurisdiction
    of this site to the Institute, and the Institute is now beginning a
    fundraising campaign to finance the cost of constructing its permanent
    headquarters building on this site.
        The Institute intends that its permanent headquarters will serve as
    a model of high tech outreach, including video/conference facilities
    with global satellite linkups, state-of-the-art World Wide Web
    connections, and automated communication through computer and other
    displays with the American public who will visit the headquarters while
    spending time in the Mall area.
        Physical planning for the headquarters will be based on an
    architectural competition which is certain to involve computer-assisted
    design techniques. This physical planning in turn will draw upon the
    Institute's information systems planning with the goal of making the
    Institute's operations even more effective and efficient.
                                     ______

                      CORPORATION FOR PUBLIC BROADCASTING
      Prepared Statement of Robert Coonrod, Executive Vice President and
                            Chief Operating Officer
                             cpb's funding request
        CPB requests a regular appropriation of $325 million for fiscal
    year 2000--the equivalent of just 2.7 percent more than the level of
    funding public broadcasting received in fiscal year 1990, adjusted for
    inflation. The Administration's fiscal year 1998 budget assumes a
    funding level of $325 million for CPB's regular fiscal year 2000
    appropriation.
        Both stations and producers are working within the constraints of
    repeated cuts and rescissions, but they cannot do so indefinitely.
    Eighty-nine percent of the increase we are seeking will go directly to
    public television and radio stations around the country, and to grants
    for program producers to help maintain high quality programming and
    station services into the future. Our limited discretionary funds will
    be used to pursue initiatives in which Congress has expressed interest,
    such as expanding our activities to meet emerging technologies, like
    the internet; drawing minorities to careers in public broadcasting at
    all levels of employment; developing educational outreach programs and
    projects; and funding systemic reform through a new grant program known
    as The Future Fund.
        Given the effects of 10 years of inflation, $325 million in 2000 is
    only a $6 million increase in buying power over our fiscal year 1990
    appropriation of $229 million. Using the same analysis, CPB's already
    enacted appropriation for fiscal year 1999--$250 million--provides 18
    percent less buying power than did our fiscal year 1990 appropriation.
        To further illustrate this point, the graph on the next page charts
    CPB appropriations between fiscal years 1990 and 2000, comparing our
    year-to-year appropriations as passed by Congress, to our year-to-year
    appropriations converted to 1990 constant dollars. The difference
    between the two lines is the effect of inflation since 1990.
    The importance of the federal dollar
        Federal support is essential to the continuation of this system. It
    is the foundation upon which state support, local support, university
    support and viewer support rests. It is not the icing on the cake; it
    is the batter that binds the system together.
        Stations serving rural areas and poor populations would likely not
    be served by public broadcasting without federal backing, because those
    stations have fewer alternative resources. Elimination of funding to
    larger stations would jeopardize our best source of premier
    programming, and would hurt small stations indirectly. Large stations
    subsidize small stations in a variety of ways--PBS dues, for example.
        The 15 percent federal investment is an example of a successful
    public/private partnership. Congress provides just enough seed money to
    draw additional funds from a variety of sources. Independent surveys
    show that the average American thinks this is a good use of federal
    funds--that the per-person cost of a year's worth of public TV and
    radio is a bargain. They appreciate having a tangible and valuable
    service in return for their tax dollar.
        Because federal funds do not require costly pledge drives, mailings
    or phone campaigns, the federal dollar is the most efficient dollar.
    How funding increases will be used
        Seventy-one percent of our appropriation is distributed to the more
    than 1,000 public radio and television stations that benefit from CPB
    grants. Each station has its own management team and Board of
    Directors, so the federal investment has varied uses. Approximately, 87
    radio and 61 TV grant recipients rely on federal grant money for 25
    percent or more of their budgets. These stations are at the greatest
    risk of financial insolvency should federal support continue to drop.
    These stations would, in turn, benefit most from a return to the
    equivalent of 1990 funding levels.
        Eighteen percent of our federal support is distributed to program
    producers through a variety of program development grant funds. After
    subtracting our contributions to ITVS, the Minority Consortia, and PBS,
    the remaining grant money for programming is distributed through CPB's
    Television Program Fund and Radio Program Fund. Based on the number of
    new television and radio programs funded this year, and not factoring
    in reduced buying power due to inflation, we could fund roughly 17
    additional television programs and 5 additional radio programs.
        System Support funds would increase by $4.5 million over fiscal
    year 1997 levels, with the possibility of savings from administrative
    belt-tightening adding to this total. In fiscal year 1997, $10 million
    of System Support funds went to meet statutorily required expenses
    (interconnection fees, music royalties, ITVS administration, Minority
    Consortia administration, and the archives). If those costs did not
    increase, $9.5 million would remain to be used at CPB's discretion for
    minority initiatives, computer based grant programs, public
    broadcasting research, partial financing of the Future Fund,
    international activities, handicap services, dissemination of
    information to the system, education projects, and new priorities that
    arise over the course of the intervening years.
    Additional future funding needs
        Our funding request is designed to address the costs involved in
    carrying out our regular activities, such as providing grants to
    stations, and distributing grants for program development. However, the
    future holds at least two additional challenges for public broadcasting
    that will involve significant costs that the regular appropriation does
    not address. We are not requesting funds for these future needs at this
    time, but we want to make you aware of these approaching concerns.
        First, the broadcasting industry is getting ready for a dramatic
    technological change: digital broadcasting. All broadcasters, including
    public broadcasters, face the need to pay for new broadcast equipment,
    new production equipment, new channel structures, and new programming
    options. Under the current plan, all broadcasters must convert to
    digital broadcasting as early as seven years from now, or eventually go
    out of business when television sets are no longer manufactured to pick
    up analog signals. Unlike commercial broadcasters, non-profit public
    broadcasting stations cannot finance the enormous capital costs of
    conversion to digital broadcasting and production equipment from
    profits or equity financing. We must have the support of the
    Administration and Congress to help us cross the threshold to this new
    technology. We want to work with the Administration and Congress in the
    coming year to calculate the costs that transition to digital
    broadcasting will involve.
        Second, public broadcasting must prepare to replace its satellite
    distribution systems by as early as 2004. The premature failure this
    January of public television's satellite, Telstar 401, makes the need
    for a new system more pressing. We have not requested funding for a new
    system, in part because we have not yet determined what the next
    generation of program distribution technology and equipment will be. We
    want to work closely with Congress to plan for these necessary changes.
    The need for reauthorization
        Our request this year follows two years of intense Congressional
    interest in public broadcasting funding that manifested itself in
    lengthy Congressional hearings and questionnaires, extensive
    negotiations over draft reauthorization bills, and several critical
    votes. One of our disappointments of the last Congress was that a
    reauthorization bill was not passed. In fact, legislation didn't even
    make it as far as subcommittee mark-up in either the House or Senate.
    It is our hope that a reauthorization bill will be considered and
    passed this Congress.
                            reforms initiated by cpb
        I am pleased to report that during my tenure at CPB, management has
    been able to work with the board to institute some of the most sweeping
    changes to our grant programs in years--changes designed to create a
    more efficient system.
    Radio program grant improvements
        We set new minimal audience standards that every radio station must
    meet in order to continue to qualify for a Community Service Grant.
    Basically, we laid down a marker: if almost no one listens to your
    programs and almost no one in your community provides financial
    support, you are not serving your community well and we can no longer
    support you with a grant. More than 95 percent of public radio stations
    meet these basic standards and CPB is offering professional and
    financial assistance to those that do not. Stations have had 18 months
    advance warning about the new standards, which will take effect at the
    beginning of fiscal year 1998.
    TV signal overlap reform
        We are addressing the problem of TV signal overlap. For the first
    time, signal overlap is a factor taken into account when determining
    the level of financial support for which a station qualifies. Two years
    from now (at the end of a three-year phase-in), we will provide only
    one base grant per market in 16 overlap markets. The base grant in 1997
    amounts to $286,000. Eventually, the funds not going to base grants
    will be distributed throughout the system as a whole to help offset the
    effect of overall federal cuts. All stations will continue to qualify
    for Non-Federal Financial Support matching funds.
    Administrative cuts
        We have cut CPB's staff, and devoted the money we saved to system
    reform. Total CPB positions, some of which were unfilled, were cut by
    25 percent in 1996. That money, along with funds from additional
    administrative savings, went into a competitive grant program (The
    Future Fund) we created to help public broadcasters implement systemic
    reforms.
        The Future Fund has two parts, radio and television, each funded at
    a level of $4.6 million in 1997. Half of the funds come from CPB
    discretionary funds, half come from station grant funds.
        The Radio Future Fund has already awarded grants for several
    promising projects:
      --Public Radio International and 12 radio stations are working to
            turn a $361,000 grant into $1.3 million in additional
            underwriting through collaboration and an improved marketing
            approach;
      --With the assistance of a $50,000 grant, 13 jazz-oriented public
            radio stations are joining forces to conduct research about
            music, financing options, and audience preferences, then engage
            in joint strategic planning based on the findings; and
      --State-of-the-art audience survey methods will be taught to public
            radio stations through development of a Member Survey Toolkit
            by Market Trends Research of Oviedo, FL. Properly conducted
            surveys can provide valuable information to public radio
            stations about their listening audience, and how that audience,
            and memberships, can be increased. The Member Survey Toolkit
            will provide expert advice on inexpensive ways to conduct
            scientifically accurate surveys.
        The TV Future Fund has committed $3 million to 17 projects, so far.
    In Florida, CPB is committing about $1 million to match $2.5 million
    being put up by Florida stations to put together a new model for
    regional or state-based public broadcasting organizations. Already, one
    programming office now does the work that was previously done by six
    programming offices. Eventually, all Florida programming will be done
    centrally, with the possibility of expansion across state lines. For
    the first time, underwriting credits are being made available on a
    statewide basis, rather than simply station to station. One preliminary
    step to accomplishing a statewide system was to establish uniform
    underwriting guidelines for all Florida stations. Also, all back office
    operations related to membership drives are being consolidated.
    Computerized data bases, telemarketing, and direct mail initiatives all
    will be handled jointly, freeing staff to develop new sources of
    funding. It is expected that these changes will generate as much as $20
    million in additional, sustainable income by the third to fifth year of
    implementation. Illinois, Texas and several New England states already
    are copying the Florida model.
        Another project brings together major producing stations and PBS to
    ``crossmarket'' national public television programs in order to
    maximize the development of national underwriters. Stations are sharing
    information about which potential underwriters have been contacted and
    forming a common strategy to expand national support. For the first
    time, an individual station seeking underwriting for its own in-house
    productions, will also share information with potential underwriters
    about programs produced by other stations, or PBS, that need
    sponsorship. Our $300,000 investment is expected to increase PBS
    program funds by 10 percent ($10 million) per year.
        A third project involves 12 to 15 stations teaming up with an
    audience research firm specializing in public television programming to
    develop software to analyze, in real time, audience reaction to pledge
    drives. Already, two pledge cycles have been subjected to this
    analysis. After strengths and weaknesses are assessed, a fund raising
    model will be developed that, hopefully, will be more effective while
    requiring fewer on-air hours devoted to pledge drives.
        Public broadcasting has never subjected itself to such intense
    self-analysis and, sometimes, painful changes as it has over the past
    two years. These changes will lead to better, more efficient
    operations.
                       minority programming and training
        Last year, this subcommittee praised CPB's improved relationship
    with minority producers and directed CPB to be prepared to testify
    about further steps we have taken to strengthen and enhance minority
    programming, and the career development of minority media
    professionals.\1\
    ---------------------------------------------------------------------------
        \1\ The Committee is encouraged by the improving relationship
    between CPB and minority program producers. The Committee directs the
    CPB President to be prepared to testify during the hearing on the
    fiscal year 2000 appropriation for CPB regarding steps CPB has taken
    during fiscal years 1996 and 1997 to strengthen and enhance African-
    American, Asian-American, and other minority programming and to support
    career development of African-American, Asian American and other
    minority media professionals. (House Report 104-659)
    ---------------------------------------------------------------------------
        During my tenure at CPB, I have made the development of minority
    programming and minority talent a priority. We will continue to fund
    several important programs despite the reduction to our federal funds.
        A common misconception about CPB is that we have vast amounts of
    discretionary funds to distribute to stations, producers, or particular
    causes that we value. The reality is that less than 10 percent of our
    appropriation is available for discretionary distribution. This
    includes all program development funds under our control as well as
    station support funds not dedicated to meeting Congressional mandates.
    Over the past several years, we have managed to add a little to that
    total by cutting back on administrative costs, but the fact remains
    that most of the funding we receive either is distributed to stations
    and other organizations in accordance with statutory requirements, or
    goes to support other mandated purposes.
        Of that relatively small amount of discretionary money (small
    compared to common expectations), a high percentage, 20 percent, went
    directly to fund minority programs in both fiscal year 1996 and fiscal
    year 1997. Of course, further cuts to our appropriation and the effect
    of inflation mean that less money will be available in the future to
    stations, producers, and special concerns like minority programming and
    employee development.
        The good news is that, even with shrinking dollars, we are making
    effective investments in minority-interest and minority-produced
    programming, and in the professional development of people of diverse
    backgrounds within the industry's employee talent pool.
        We are not starting from scratch. Since 1989, we have provided
    annual reports to Congress about our efforts to expand diversity both
    in terms of what public broadcasting stations air and whom they employ.
    We have a track record of progress. A 1995 independent survey reported
    that 65 percent of individuals asked believe public television performs
    better than other television networks in creating realistic, non-
    stereotypical characterizations of people from various backgrounds. We
    are proud of that statistic, but not satisfied. As of January 1996,
    between 18 percent and 19 percent of all full-time employees at public
    radio and television stations were minorities. More than 17 percent of
    station officials and managers were from diverse backgrounds. Again, we
    are proud of progress in this area, but we intend to improve.
                                  programming
    Minority consortia
        Through our support of the five Minority Consortia \2\, we have
    made significant investments in human and capital resources with the
    goal of creating an infrastructure of minority producers and public
    broadcasting executives that will eventually achieve independence from
    CPB. The Consortia function as developers, producers, and distributors
    of radio and television programming that not only appeals to diverse
    audiences, but also harnesses the creative talents of minority
    communities. In 1996 and 1997 combined, CPB will provide $9.7 million
    for programming and administrative support for the five Consortia.
    ---------------------------------------------------------------------------
        \2\ The five Minority Consortia are: the National Asian American
    Telecommunications Association, the National Black Programming
    Consortium, the National Latino Communications Center, Native American
    Public Telecommunications, and Pacific Islanders in Communication.
    ---------------------------------------------------------------------------
        The Consortia are becoming valued sources of innovative
    programming. Congress should be recognized for its role in supporting
    these organizations through funds directed to CPB. Mr. Bill Pearce, a
    Native American, who recently retired after 26 years as president of
    public radio station WXXI-AM in Rochester, NY, made the following
    observations in The Vision Maker, the newsletter of Native American
    Public Telecommunications:
        CPB has carried out its mission to democratize a national radio and
    TV system so that all facets of our national community are
    represented--and it has done this despite reduced appropriation and
    staff cutbacks. NAPT and all its constituencies are deeply appreciative
    of CPB's continued dedication to a primary goal, that of reaching
    diverse audiences with programming from diverse sources.
        CPB's coming 30th birthday deserves a salute from all Americans for
    inspiring outstanding programming for all radio and television
    audiences that never would have resulted otherwise.
        The funding history of the consortia is one of steady increase from
    an initial funding of $840,000 in 1978 through a total of $5 million in
    1995 and 1996. Despite an overall funding cut of $44 million, or 15
    percent, between passage of our fiscal year 1995 appropriation and
    payment of our fiscal year 1996 appropriation, we protected the
    Consortia from any funding cuts in our fiscal year 1996 budget. Our
    overall fiscal year 1997 appropriation was hit with a rescission of 17
    percent. Minority Consortia funding for fiscal year 1997 will be
    reduced by 5 percent from the previous year.
        Also in 1995, as CPB began emphasizing the need for stations to
    move toward self-sufficiency, the five Consortia sought help in moving
    toward self-sufficiency, too. In response, in 1996, CPB hired the
    Teller Group, a strategic consulting firm with substantial experience
    in ethnic and media market analysis, to design a business plan for the
    Minority Consortia. The Teller Group is working with the Consortia to
    ensure effective fund raising and program development, and suggest
    improvements where appropriate.
    CPB-controlled programming dollars
        In addition to the support supplied to the Minority Consortia,
    CPB's radio and television program funds make grants to minority
    producers and to producers of projects of interest to minority
    communities.
    A. Radio
        Of the funds set aside for radio stations and radio programming, 7
    percent are reserved for CPB's Radio Program Fund. In 1997, that $4.4
    million fund will support 22 projects. Eight of those projects, funded
    at a cumulative level of $2.2 million, are projects that are either
    produced by, or are of interest to, minorities.
        For example:
      --Through the University of Texas, Austin, Center for Mexican
            American Studies, we are funding a weekly, English language,
            half hour news and cultural arts journal dedicated to coverage
            of the Hispanic community;
      --The voices of former slaves in America, recorded in the 1930's,
            will be rebroadcast in a program entitled Slaves No More; and
      --Native America Calling and American Indian Radio on Satellite
            provide programming of interest to Native Americans.
        Over the last several years, CPB has devoted significant funding to
    American Indian Radio on Satellite (AIROS). Prior to funding AIROS, CPB
    funded the Downlink Assistance Project from 1991 to 1995. Fifty
    stations, 16 of which were Native American Stations, became
    interconnected to the Public Radio Satellite System and, therefore,
    able to broadcast AIROS programming.
    B. Television
        In 1996, CPB supported:
      --An ambitious six-part series that will explore the natural history
            and cultural development of the African continent, to be titled
            Africa: Land of the Sun;
      --Family Name, in which filmmaker Macky Alston traces her roots
            through her black and white ancestors from North Carolina as a
            way of examining the legacy of slavery in America;
      --Watts Side Story examines a unique after-school program known as
            Colors United, which is claiming a 100 percent success rate of
            helping at-risk students complete high school; and
      --Puzzle Place, where multicultural puppets help children learn to
            appreciate the differences between people and the ties that
            bind them together.
        First round grants from the 1997 Program Fund have been awarded,
    and, again, many of the winners are projects either produced by
    minorities or that deal with issues that highlight other cultures and
    minority interests. For example, the abusive relationship between
    Japanese Imperial soldiers in World War II and Korean women will be
    examined in a one-hour documentary, and 350 years of Jewish community
    life will be examined in They Came for Good, A History of Jews in
    America.
    Television program funds not controlled by CPB
        By contract, and in accordance with our statute, CPB provides $22.5
    million to PBS for development of its National Program Service.
    Historically, CPB's contribution to the National Program Service
    amounts to roughly 20 percent of the total, though PBS determines which
    projects are to be funded. Many programs funded by PBS are by
    minorities or of interest to minorities, but it is not possible to
    trace CPB programming dollars to those specific projects.
        Similarly, CPB provides $7 million in programming funds to the
    Independent Television Service (ITVS). ITVS, in turn, determines which
    projects it will fund. When ITVS develops a project produced by a
    minority or of interest to minorities, the effect is that CPB money is
    supporting that project, as Congress intended.
    Local programming by or of interest to minorities
        CPB's radio and television program funds are reserved for the
    development of projects intended for a national audience. Individual
    television and radio stations, however, use their resources to produce
    and air local programming to local audiences. These programs often are
    produced by minorities or are about topics of interest to minorities.
    Over 200 examples of programs produced and aired locally are listed in
    our most recent report on Public Broadcasting's Services to Minorities
    and Other Groups, July 1, 1996.
        For example, Native Americans are one of the fastest growing radio
    audiences. Since 1992, CPB has approved four new stations for grants,
    bringing the total number of Native-run stations supported by CPB
    grants to 28. A staple of every one of these stations is local
    programming for the local Native American population, often in the
    local Native American language. Though CPB does not directly fund these
    local programs, we provide overall support to the stations that
    originate the programs.
                   minority employment and training programs
    College internships
        In 1993, CPB developed The Jump Start Support Program, a matching
    grant program designed to increase diversity in the workplaces of
    public broadcasting stations. In 1995, The National Scholars Program,
    under the umbrella of Jump Start, provided 30 college students the
    opportunity to work at local stations and regional organizations to
    expose them to the world of broadcasting, and public broadcasting in
    particular.
        The National Scholars Program was continued in a slightly different
    form in 1996 through a $95,000 grant to the Pacific Mountain Network
    and is now known under the name New Media Fellows.
        Here are some of the students involved in the 1996 program, as they
    described themselves to us on their applications:
      --Chris Burnside, a film and TV major at Montana State University
            whose native tongue is Navajo, and who considers English to be
            his second language.
      --Blanca Torres, a communications major from Stanford University who
            says of herself, ``I am a dynamic, dedicated Latina woman who
            is determined to educate those around her and fight the
            ignorance that plagues the beliefs our society holds. This
            desire drives my life and molds me into a person who is
            dedicated to making a difference, however slight it may seem.''
      --Gladys Knight, a communications major from the University of Puget
            Sound, listed some of her activities. ``As an officer and
            member of the Black Student Union, I presented talks about our
            culture. I became the first black woman to become a Passages
            Leader (camp counselor) during a week-long Orientation Program
            for incoming freshmen. As a Passages Leader, I presented BaFa
            BaFa, a cultural game and African Storytelling and Dance, and
            led an excursion to the Snohomish and Skokomish Indian
            Reservations.''
        Thirty-five other equally interesting and impressive young people
    participated in the program. Better yet, as of our last check, 11 of
    those individuals have been hired by the stations where they interned.
    Next generation
        Next Generation is a public radio leadership program that matches
    seasoned public radio leaders with younger professionals and managers
    of diverse backgrounds. The goal is to help provide the tools,
    experienced advice, and important contacts that will help these young
    professionals advance in their careers. It is hoped that this next
    generation of industry leaders, in turn, will help to develop the
    subsequent generation of leaders. The program helped ten participants
    and ten mentors in 1994-1996.
        The success of the first Next Generation program has led us to
    initiate a second round. This project will be a joint undertaking with
    National Public Radio, which has contributed $20,000 to the effort.
    Koahnic Broadcast Corporation Training Center
        Formerly known as the Indigenous Broadcast Center, the Koahnic
    Broadcast Corporation Training Center is the only national institution
    dedicated to training Native Americans and Alaskan Natives in public
    radio. It serves as the operating headquarters for radio training of
    Native American public broadcasters in Alaska, Hawaii, and the lower 48
    states. It is a place for Native Americans to learn production skills,
    broadcast engineering, reporting, and station development.
    The Affordable Career Development Project
        This program underwrites the costs of attendance at seminars
    organized by the National Press Foundation's Washington Journalism
    Center and the Poynter Institute for Media Studies in St. Petersburg,
    FL. Public broadcasting journalists, particularly women and minorities,
    receive assistance in their career development.
    Employment Outreach Project
        The Corporation established a nationwide applicant referral project
    as a service to public TV and radio stations. The Employment Outreach
    Project solicits and receives resumes from individuals interested in
    career opportunities in public broadcasting. Those resumes are referred
    to stations for possible consideration for job openings. Minorities and
    women are particularly sought.
                                    outreach
    Networking among multicultural producers
        CPB provides financial assistance for qualifying producers and
    directors to attend the Multicultural Producers Forum at the annual
    Public Radio Conference, and the Producers of Culturally Diverse
    Programming Forum at the yearly Public Television Meeting. The
    assistance includes meeting fees, reimbursement for reasonable lodging
    costs and partial reimbursement of transportation expenses.
    Outreach at minority media fairs
        CPB provides financial support to minority radio projects at the
    annual meetings of the National Black Journalists Association, the
    Asian American Journalists Association, the National Press Foundation's
    Washington Journalism Center and the Poynter Institute for Media
    Studies.
    Research
        CPB's research department investigates the listening and viewing
    interests of minority groups, and assesses how well public broadcasting
    programming matches those interests. Information gathered from this
    research is distributed throughout CPB and the public broadcasting
    industry to provide factual guidance on how best to serve diverse
    audiences.
                  summary of minority support in 1996 and 1997
        CPB has aggressively established programs that recruit new talent
    from minority pools, promote existing talented minorities working in
    public broadcasting, and promote diversity in public radio and
    television workplaces all over the country. Our support for internship
    programs like the New Media Fellows will continue in 1997. We will
    select a new group of potential leaders to match with mentors through
    the Next Generation program. Support for the Koahnic Broadcast
    Corporation Training Center will be maintained at 1996 levels
    ($165,000). And we will continue to fund the Affordable Career
    Development Project.
        Although programming for minority audiences will remain a priority,
    reduced federal appropriations will affect our efforts. In 1997, we are
    continuing to fund the administrative and program development costs of
    the Minority Consortia on a priority basis by limiting funding
    reductions to 5 percent, despite a $55 million rescission. However,
    total funding for our radio and television program funds will be
    reduced in proportion to our appropriation. We intend to maintain our
    track record of using a high proportion of those funds to support
    projects by minorities or of interest to minorities.
        We plan to continue our efforts to bring minority producers
    together for networking and information sharing at national conferences
    through the Multicultural Producers Forum and the Producers of
    Culturally Diverse Programming Forum. We will visit more minority media
    fairs than before, and will continue, where necessary, to use research
    dollars to identify the needs of minority audiences and work to meet
    them.
        Overall funding for these programs will likely decrease as our very
    limited discretionary funds decrease. We are continuing, however, to
    spend roughly 20 percent of our discretionary funds on these programs
    in 1997.
                                   education
        Education is at the heart of what public broadcasting does. Public
    broadcasting reaches almost every home, school, and business in America
    to make important learning resources available to all. CPB is dedicated
    to helping--and inspiring-- learners of all ages in schools, at
    colleges and universities, at work, and at home. We are particularly
    proud of our reputation for excellence in children's programming, and
    we are building on that strength through new program development, the
    Ready to Learn Program, and a variety of teacher training programs.
    Nonviolent children's programming
        Our commitment to children is as old as public broadcasting itself.
    Mister Rogers' Neighborhood and Sesame Street are among the longest
    running series offered through the Public Broadcasting Service. These
    pioneering programs have been joined by award-winning series such as
    Barney and Friends, Lamb Chop's Play Along, Wishbone, `Kratts'
    Creatures, and Where in the World Is Carmen Sandiego?, among others.
    Child development and education experts often cite these carefully
    created series as examples of how television can benefit children.
    Their educational value has been confirmed by a number of academic
    studies.
        Public television stations air nearly 1,900 hours of children's
    programming, or more than 3,300 programs, every year. Nearly 50 percent
    of the children's programming aired nationally is funded directly by
    CPB. The average public television station airs more than six hours of
    quality, non-commercial children's programming every day.
    Ready to learn
        The Ready To Learn (RTL) initiative is designed to help all
    children enter school ready to learn by the year 2000. In 1997, CPB is
    administering a $7 million grant from the Department of Education for
    Ready to Learn initiatives. From 10 stations in 1994, the Ready to
    Learn program has grown to 95 stations in 1997. These stations reach
    76.5 percent of U.S. television households, or more than 73 million
    American homes, and more than 29 million children ages 2-11.
        Participating public television stations work with local partners
    to provide a variety of services to children, their parents, and
    caregivers. These services include excellent children's programming,
    publications, caregiver workshops, and free book distribution.
        Specifically:
      --RTL stations agree to air at least 6.5 hours of nonviolent,
            educational children's television programming daily.
      --800,000 copies of PTV Families/Para La Familia are distributed
            bimonthly through stations to families across the country. The
            magazine is designed to help adults become more involved in the
            learning process by featuring learning activities for parents
            and children.
      --Parents, teachers, and caregivers may attend ``person-to-person''
            training provided by professionals working with their local
            pubic television station to link the lessons in the programming
            with related reading and learning activities.
      --In cooperation with First Book, a national nonprofit organization,
            CPB distributes half a million books to participating public
            television stations that then provide the books, free-of-
            charge, to children in their communities.
    Public television in the classroom
        Inexpensive VCRs have made the use of television programming in the
    classroom more convenient and widespread than ever. Public broadcasters
    help teachers use these television programs effectively. System-wide,
    public broadcasting invests about $60 million in formal instructional
    television services every year.
        According to CPB's ``Study of School Uses of Television and
    Video'':
      --Almost four out of every five teachers used television in their
            classroom during the 1990-1991 school year, serving close to 24
            million students; and
      --three of the five most used programs cited by teachers--and six of
            the top 10--were originally broadcast by public television.
        With funds from CPB and other sources, PBS's National Program
    Service recently bought extended rights for classroom teachers to use
    more than a dozen prime-time programs, such as NOVA and The American
    Experience.
    Helping teachers teach
        CPB sponsors training programs that give teachers access to
    information about education reforms and technological advances.
      --The National Teacher Training Institute--CPB and Texaco have teamed
            up to provide funding assistance for this program created by
            Thirteen/WNET in New York City to help educators use public
            television's wealth of instructional programming and
            telecommunications resources effectively and creatively.
      --The Ernest L. Boyer Technology Summits for Educators--CPB and the
            National Council for the Accreditation of Teacher Education are
            holding four regional summits (named in honor of the late
            president of the Carnegie Foundation for the Advancement of
            Teaching) that will engage teams comprised of high school
            teachers, university professors, and librarians in serious
            discussion about technology and how it can best be used to help
            students master academic content. In a nine month follow-up
            period, each team will work to create a finished curriculum
            project that employs technology in the teaching of content
            subjects.
      --The Annenberg/CPB Math and Science Project--For five years, the
            Math and Science Project has funded more than 40 educational
            technology endeavors. Funded projects capitalize on existing
            reform efforts, creating a coordinated communications system of
            human and electronic networks, video and print resources and
            major media campaigns.
      --The 1996 NII Awards--For the second year running, CPB is a proud
            sponsor of the National Information Infrastructure (NII) awards
            which pay tribute to the best of the best on the Information
            Highway. From electronic commerce, Intranets and telemedicine
            to community networks, educational Web sites and broadband, the
            NII Awards go to projects that show the world the power and
            potential of networked, interactive communications.
                                 new technology
        Using a portion of our very limited Station Support funds, CPB is
    investing in a number of initiatives designed to create a presence for
    public broadcasting in emerging communications fields like the
    Internet.
    Civic networking grants
        CPB is providing grants to four civic networking organizations and
    public broadcasters for the development of community focused online
    services and activities. Grant recipients in Davis, CA; Hampton Bays,
    NY; Chicago, IL; St. Louis, MO; and Spokane, WA, will team with local
    libraries, public broadcasters, schools, and other community
    institutions to consolidate their strengths and give local character to
    their services.
        Civic networking provides better ways to find, create, and exchange
    information within communities.
    CWEIS: Community-Wide Education and Information Services
        The CWEIS initiative is designed to develop and encourage free
    public access to education and information online services where they
    do not already exist, using local public radio and television stations
    as a nucleus. Our goal is to have each new network bring together a
    wide range of institutions, including area public broadcasting
    entities, local educational, cultural and community organizations, as
    well as members of the telecommunications and computer industries.
    Together, they will build a community-based telecommunications
    infrastructure that will provide free access to essential services on
    the information superhighway.
        For example:
      --WNIN Online is a dial-up bulletin board that links existing
            community wide education and information services in
            Evansville, IN, and creates new public access points to break
            down barriers to the information highway faced by low income
            residents. Service for Evansville and nearby communities in
            Illinois and Kentucky include internet electronic mail,
            newspaper supplements, interactive forums on community issues,
            educational and outreach materials related to WNIN, broadcast
            programming access to local public university libraries, public
            school bulletin boards, and social service agency information.
    The K-12 internet testbed
        In this program, local public broadcasters, schools, universities,
    and numerous community organizations team up to develop a wide range of
    curricular programs and provide K-12 students and teachers with
    electronic publishing capabilities.
        So far, CPB has funded 15 educational technology projects across
    the country as part of this grant effort.
        For example:
      --With Yugtun Qanemcit (``People Talking''), KYUK brings direct
            internet access for the first time to the students of the
            Yukon-Kuskokwim Delta in southwest Alaska, a remote region
            about the size of Ohio. The student population of Bethel
            Regional High School, largely made up of Yup'ik Eskimo and
            Athabaskan Indians, will focus on World Wide Web publishing and
            long-distance information exchange projects with other schools.
            So far, students plan to develop web pages to coincide with the
            Iditarod Sled Dog Race, which would be covered by student
            reporters; engage in on-line collaboration with the school
            district's sister school in Jerusalem; and explore a variety of
            cultural literacy events which focus on native lifestyles and
            traditions.
    Multimedia/multichannel educational projects
        A $2.5 million grant has been made available for eight interactive
    educational networking projects that provide teachers, parents, and
    children free access to information and online computer resources for
    learning.
        For example:
      --The Soundprint Media Center, Inc., of Washington, D.C., has
            received a grant of $750,000 from CPB in addition to funding
            from the United States Department of Education to create the
            Education Connection, a community, school and business
            partnership. In addition to CPB funding, public broadcasting
            stations in Philadelphia, Los Angeles, Mississippi, and
            Louisiana are providing resources such as educational
            materials, broadcast programs, infrastructure assistance and
            electronic delivery systems to help school systems create an
            interactive K-12 curriculum in math, science, social studies,
            geography and the fine arts.
    Public broadcasting stations and the Internet
        A survey of public broadcasting stations reflecting station
    activities in 1995 shows that stations--each of which is managed
    independently--are quickly moving to provide services on the Internet.
    Out of approximately 200 television and radio stations responding, 190
    had Internet access, 63 had established bulletin boards on the
    internet, 93 had e-mail capabilities, 83 had links to other online
    resources, and 63 used the Internet to provide forms for audience and
    membership feedback. Eighty-two had established home pages on the World
    Wide Web.
        More and more stations are using their Internet access to provide
    services to schools and the general public. Forty-three stations
    provide electronic mail to schools or the public, 15 provide access to
    UseNet news groups, 15 provide an online newsletter, and 19 provide
    access to the Gopher server. In addition, 79 stations make locally
    created content available to schools and the general public.
      the impact of a freeze at the fiscal year 1998 level through fiscal
                                   year 2002
        Having described our funding request and the programs CPB supports,
    I will close by specifically addressing two issues of interest to the
    Subcommittee: the potential impact of a freeze from fiscal years 1998
    through 2002 at the fiscal year 1998 level; and an analysis of the
    impact of automation on efficiency.
        Congress has already passed CPB's fiscal year 1998 and fiscal year
    1999 appropriation. Funding for fiscal year 1998 will be $10 million
    below the fiscal year 1997 level of $260 million. Funding for fiscal
    year 1999 is frozen at the fiscal year 1998 level of $250 million, the
    lowest federal support for CPB in a decade, when factoring in the
    effect of inflation. In addition, CPB experienced rescissions (adding
    up to almost $100 million) in each of the three years leading up to
    fiscal year 1998.
        In light of this history of real cuts and loss of buying power due
    to inflation (see the chart on page two), a freeze at the $250 million
    level through fiscal year 2002 would have a potentially devastating
    impact on the system. Seventy-one percent of funds appropriated to CPB
    go directly to radio and television stations in the form of grants.
    Each radio and TV station that receives our funds has its own budget
    and its own sources of funding to maintain operations. Should federal
    support be frozen at $250 million through fiscal year 2002, each
    station will find itself in a different position depending on the
    availability of other funding sources, such as affiliations with other
    stations through state networks. For example, approximately 87 radio
    and 61 TV grant recipients rely on CPB funds for 25 percent or more of
    their budgets. These stations are at the greatest risk of financial
    insolvency should federal support be frozen at $250 million through
    fiscal year 2002.
        Eighteen percent of our funds support the production of quality
    television and radio programming--the most important service we
    deliver. A freeze for another three years at our lowest funding level
    in recent history would almost guarantee that the quality and scope of
    new programming will suffer. Because quality programming is the most
    important service we deliver, we would be unable to afford to provide a
    product that meets the high standards the public has come to expect
    from public broadcasting. If the excellence of our programming erodes,
    underwriters, viewers, and donors will begin to turn away and the
    system will begin to unravel.
        We identify our core mission in four parts: education, localism,
    universal service, and non-commercial broadcasting. A funding freeze
    carried out to 2002 would compromise each of these core goals.
        Education is carried out through programming and special station
    outreach programs. Program development funds support not only new
    programs, but also new episodes of existing shows. When program
    development funds fail even to keep pace with inflation, every
    educational program is affected. As public broadcasting has grown to
    encompass more than traditional broadcast services, our community
    outreach programs will also suffer. Few stations would be able to
    continue to afford educational outreach programs if federal support is
    frozen at the current low level for another four years.
        Localism--local news, local programming, and community
    involvement--is one of the main benefits derived from having a variety
    of stations within a state. We encourage stations to maintain these
    crucial local identities while spreading the word that duplicative
    buildings, equipment, and staff are not necessarily needed to
    accomplish this important goal. Nevertheless, four years of cuts
    followed by a four-year hard freeze would force many states to stop
    funding local stations in favor of repeating the ``big city'' signal to
    every community. In some extremely isolated situations, there is no
    ``big city'' signal available to retransmit, and the only alternative
    to the local station is no station at all. If a station ceases
    operations, without another public station available to provide
    service, the threat to localism also becomes a threat to our goal of
    universal access.
        CPB believes public broadcasting stations have the potential to be
    more entrepreneurial--in fact, we created a new grant program to fund
    these types of activities (the Future Fund). We do not, however,
    advocate compromising our noncommercial nature--an essential part of
    our character and identity. In addition to being an integral part of
    our mission, noncommercialism is mandated by the FCC regulations that
    govern public broadcasters and provisions in the CPB authorizing
    statute. If stations find themselves in a position in which they must
    double or triple outside fund raising in order to maintain operations
    in the face of continued low levels of federal support, many will
    ultimately be forced to discontinue broadcasting. Others will no longer
    be able to afford to air the excellent national programming that people
    associate with public broadcasting: shows distributed by National
    Public Radio, the Public Broadcasting Service, Public Radio
    International and other national program sources.
                           savings through automation
        As mentioned on page five of this testimony, CPB has reduced its
    own staff by about 25 percent since 1995. These reductions were not
    generally the result of increased dependence on automation. Unlike
    large federal agencies, individual departments at CPB tend to be small,
    5 to 10 people (total employees number fewer than 80). Automation tends
    not to show dramatic savings at the small scale at which CPB operates.
    We found that the best way to reduce costs was simply to shrink the
    total staff and, to the extent possible, carry out our duties with
    fewer employees.
        Public broadcasting as a whole is, by its nature, already a highly
    automated business. People provide creative direction of projects and
    administrative oversight, but much of the remainder of the work
    involves operating, maintaining, and repairing sophisticated equipment.
    In some cases, the jobs done by people can be carried out by computers
    in a more cost-effective manner. Sometimes a more effective way to save
    time and money is to eliminate the human and machine redundancy that
    currently exists within many states and markets. CPB's Future Fund is
    designed to enable stations to seek out these sorts of inefficiencies
    and eliminate them.
                                   conclusion
        What I have described to you is an organization that is:
      --actively reforming itself to increase self-sufficiency and
            efficiency;
      --progressively developing programming by and of interest to
            minorities;
      --aggressively working to further diversify our employee talent pool;
      --setting the standard in the broadcasting of children's educational
            programming; and
      --creatively looking to future technologies and new avenues of public
            service.
        We are carrying out these initiatives to the best of our ability,
    despite a string of rescissions and funding cuts. Our request does not,
    and is not intended to, reverse all cuts and rescissions since 1995.
    For fiscal year 2000, we are asking to be funded at a level that is
    roughly equivalent to what we received 10 years ago. We believe the
    programs and services we provide merit this continued investment.
                                     ______

                   FEDERAL MEDIATION AND CONCILIATION SERVICE
               Prepared Statement of John Calhoun Wells, Director
        Mr. Chairman and Members of the Subcommittee, it is my pleasure to
    present to you the fiscal year 1998 appropriation request for the
    Federal Mediation and Conciliation Service (FMCS). I would like to
    describe our recent accomplishments, outline our objectives, and
    provide information on the resources needed to achieve them.
        In 1997, FMCS celebrates its 50th anniversary. Created as an
    independent agency by the 1947 Taft-Hartley Act, FMCS was directed to
    provide mediation, conciliation and arbitration services to labor and
    management. Since then, FMCS's charter has been expanded by a variety
    of subsequent statutory enactments, making it our nation's premier body
    for resolution of labor-management disputes and the key public source
    of alternative dispute resolution (ADR) assistance to other
    governmental agencies. Today, FMCS provides, on a strictly voluntary
    basis, mediation, arbitration and ADR services and awards grants to
    promote labor-management cooperation.
                recent accomplishments--fmcs reinvention efforts
        As we approach our historic 50 year landmark, FMCS is being
    challenged to adjust to profound and persistent change. We are
    responding to the same social and economic forces which are
    transforming the work lives of labor and management. The American
    workplace, both private and public, is facing dramatic challenges posed
    by new technologies, heightened competition, both domestic and
    international, deregulation of major industries, and growing workforce
    diversity. These profound changes compelled us to rigorously review our
    own mission, services, performance, and structure.
        For the last three years, FMCS has been engaged in a comprehensive
    and systemic organizational change effort for the purpose of improved
    mediation performance and customer satisfaction with our services.
    Today, FMCS ``reinvention'' initiatives are substantially underway. The
    Agency has experienced very significant change. This has not been easy,
    and not everyone among our ranks has agreed with the direction taken.
    However, almost without exception, our customers from business and
    industry and organized labor have been supportive of our reinvention
    efforts. Our mediators and our entire workforce are deeply committed to
    the work of this Agency and to strengthening its performance so that it
    can continue to successfully contribute to our nation in this
    challenging era. I am personally very grateful for their efforts over
    the last three years and for the tremendous progress we have made
    together.
        We have taken a private sector approach to our own reinvention.
    Critical to this entrepreneurial approach is a focus on customers and
    their needs, improving the quality of our services, and strengthening
    our performance. Our Strategic Action Plan 1995-97, based on the
    recommendations of The Mediator Task Force on the Future of FMCS, is a
    series of mutually reinforcing, sequential steps to institutionally
    position us to continuously respond to changing external demands with
    high quality performance. The change process underway has entailed an
    organizational restructuring; redefining leadership roles and
    responsibilities; evaluating hiring criteria and expectations of
    performance; creating a learning environment; closing technology gaps;
    setting evaluation criteria to reward and encourage improved
    performance; and, institutionalizing a customer focus to ensure ongoing
    monitoring and reassessment--the pursuit of continuous improvement.
        FMCS is striving to be a full service mediation agency with ``360
    degree mediators'' able to deliver the full array of services which our
    customers seek--from traditional mediation of adversarial or
    acrimonious labor disputes to assisting management and labor in the
    creation of new partnering processes for workplace improvement, from
    alternative dispute resolution assistance in complex regulatory
    negotiations to providing assistance to emerging nations seeking to
    create industrial relations systems and conflict resolution
    capabilities.
        To support our strategic redirection, in fiscal year 1997 FMCS
    sought and Congress appropriated funds for a customer survey, for
    education and training of our workforce, and to modernize the agency's
    technology. We are proud of our progress in each of these initiatives.
                                customer survey
        During 1997 we will be examining the results of the first-ever FMCS
    nationwide customer survey. Designed by a senior professor and research
    professionals from MIT's Sloan School of Management, the survey will
    let us hear from our labor and management customers about the value and
    quality of our services and how we can improve. We expect to receive
    the report and analysis of the survey data within the next few months
    and will immediately provide a copy to this Committee. About 1600 labor
    and management representatives, or 74 percent of the scientifically-
    representative sample of customers and potential customers, responded
    to the survey, conducted by telephone interviews. This survey will
    provide a baseline of information against which to measure the Agency's
    future performance and progress over time. It will thereby be a
    benchmark against which to measure performance and customer
    satisfaction.
                        employee education and training
        Over the past two years, education and training of our entire
    workforce has been a top priority. With a newly appointed training and
    education coordinator, we began by surveying skills and interests of
    each employee and creating individual development plans. In 1996, an
    ambitious education and training plan included a national seminar,
    regional seminars, a three-part training course for newly hired
    mediators, and extensive technology training. Mediators attended
    courses at the Harvard University Program on Negotiation and other
    courses on high performance workplace strategies. These efforts
    continue in 1997, including a national educational seminar to be
    offered in conjunction with the Agency's 50th anniversary.
        A major curriculum design initiative is underway which will give
    mediators high quality tools enabling them to diffuse ``best
    practices'' in mediation and training in their work with the parties.
    In 1997 regional seminars will focus on educating mediators on the
    newly developed curriculum and information and communication
    technology.
        In our headquarters, we provided courses relating to the Agency's
    mission, necessary job skills, and partnership skills such as team work
    and problem solving. In connection with our reengineering efforts, we
    have taught work redesign concepts and processes. This year we will
    explore cross training possibilities arising from our reengineering.
        Following our organizational restructuring last year, education was
    provided to the new leadership team in organizational change, team
    leadership, performance measurement and learning organization concepts.
    In February 1997, agency leadership participated in a challenging and
    rewarding one-week executive leadership development program offered by
    the Center for Creative Leadership.
        In 1998, we will continue to upgrade skills to keep pace with rapid
    workplace changes, maintaining and fine tuning existing training plans.
    We will use customer survey data to assess whether our training
    approaches have been appropriate. A major goal, however, will be to
    broaden our fairly traditional learning approach geared at upgrading
    skills and acquiring new ones to create a systemic learning
    organization environment, or one in which we are constantly learning
    from each other. With the basic foundation in place, we will strive to
    progress to a more expansive level of continuous improvement and
    innovation.
                            technology modernization
        Three years ago, less than 25 percent of our mediators had access
    to computers, only a third of our 78 field offices were equipped with
    fax machines, there was limited internal communications linkage, and
    there was no E-mail. Reports were being completed by hand or on
    typewriters, and files and reports were transmitted by mail. Following
    the issuance of the Mediator Task Force Report, a commitment was made
    to upgrade the agency's information and communications technology.
        Today, we have already transformed our information technology (IT)
    capabilities. Our strategic information plan encompassed system
    architecture, hardware and system software requirements, application
    software, and training. Fundamental to our IT plan is a commitment to
    implement no new technology without comprehensive training to assure
    effective usage and increase proficiency. In 1996 our priority was to
    equip mediators with the tools necessary to do their jobs more
    efficiently. A substantial portion of the 1996 technology appropriation
    was dedicated to hardware and software purchases for the field.
        On April 1, 1997, we introduced an Intranet system. This will
    provide a fully integrated information system throughout the Agency and
    its field offices. It will enhance agency communications, broaden
    access to educational resources, contribute to more effective and
    efficient operations, reduce reliance on traditional clerical support,
    and enable us to perform better. It will allow electronic filing of
    travel vouchers and itineraries, and provide capability to send and
    receive E-mail and faxes. It will also provide access to our growing
    resource clearinghouse containing books, articles, training materials,
    videos and other information on collective bargaining, labor management
    relations and partnerships, conflict resolution, negotiated rulemaking
    and resolution of EEO disputes. Training in the system will continue
    intensively during the year. By October 1, we will complete the switch
    to a fully electronic case management system, covering assignment,
    reporting and tracking of all mediation activity.
        Also, on April 1, we went on-line with an FMCS home page at
    www.fmcs.gov. In conjunction with ongoing reengineering in our
    arbitration and notice processing offices, we are planning to
    introduce, hopefully, within the next year, electronic access for our
    labor and management customers to file required notices of contract
    expiration and requests for arbitration services. A design for such a
    system has been completed.
        Our information technology investment strategy has been linked to
    improving mission performance, supporting work processes that are being
    redesigned to reduce costs and improve effectiveness, and fulfilling
    agency streamlining goals. Given unceasing innovation, we understand
    that technology modernization never ends. Our Fiscal year 1998 goals
    are to maintain our integrated information system, systematically
    replace hardware as it reaches the end of its useful life, and keep
    pace with innovation.
        We are proud of our progress in achieving our reinvention goals. We
    recognize, however, that this work will never be completed. Through our
    efforts, we hope to create the internal capacity to continue to adapt
    and grow in the face of the certain change which lies ahead.
                                 fmcs programs
        FMCS programs are designed to improve the country's collective
    bargaining, labor-management relations, and conflict resolution
    systems, in an effort to improve workplace relations and performance
    and thereby enhance our Nation's ability to compete in the
    international marketplace.
                               dispute mediation
        Mediators assist labor and management in the negotiation of
    collective bargaining agreements, thereby helping them to settle their
    disputes and avert or minimize work stoppages. Federal mediators have
    been active in negotiations throughout the United States, conducting
    17,870 dispute mediation meetings in 5,285 active cases in fiscal year
    1996.
        Notable cases this past year include our work to help resolve a 94-
    day strike against McDonnell Douglas Corporation by the International
    Association of Machinists, with marathon bargaining sessions. In
    another case involving UNO-VEN, a joint venture between a U.S. oil
    company and the Venezuelan State oil company, and the Oil, Chemical,
    and Atomic Workers Local 7-517, after numerous mediation sessions, a
    strike was avoided and a five-year agreement was reached.
        Over the last five years, 85 percent of the negotiations in which
    mediators were actively involved have resulted in agreements. By
    contrast, agreements were reached in only 69 percent of those
    negotiations without FMCS mediation. The positive contribution of our
    mediators is evident, especially since mediation is usually sought only
    when negotiations are difficult.
        In fiscal year 1998, contracts will expire and negotiations occur
    in many industries, including trucking, communications and information,
    utilities, retail food, construction, health care, tire manufacturing,
    hotels, amusements and entertainment, and paper manufacturing, as well
    as in public schools. Livelihoods of thousands of American working
    people are at stake in many of these negotiations. FMCS mediators will
    be actively involved in about 5,300 of these cases, where they will be
    instrumental, if not critical, to the peaceful resolution of these
    disputes.
                              preventive mediation
        Mediators also assist labor and management in learning to minimize
    conflict, improve their relationships, and move from antagonism to
    partnerships. Through this work mediators help the parties to create
    profitable and economically secure enterprises, thereby improving
    economic performance, employment security, and organizational
    effectiveness. FMCS mediators provide a variety of programs which
    introduce the parties to more effective techniques and skills in
    bargaining, communications, joint problem-solving and innovative
    conflict resolution. Preventive mediation is a growing portion of our
    workload. In fiscal year 1996, FMCS mediators were involved in 2,537
    preventive mediation cases.
        Significant preventive mediation work last year involved Bechtel
    Corporation and the Southern Nevada Labor Alliance. Mediators provided
    facilitation and training for continuous improvement committees
    established to improve productivity, quality and work methods. This is
    the first time a Nevada Test Site prime contractor and its unions have
    engaged in cooperative processes and, in fact, the first private sector
    activity of this type in the State of Nevada.
        Also, mediators assisted the Amoco Texas City, Texas, refinery and
    the Oil, Chemical & Atomic Workers Local 4-449 in a Relationship By
    Objectives process to establish goals and build a more constructive
    relationship and trained them in interest based bargaining. In the
    words of the Amoco Senior Vice President, the mediators helped the
    parties usher in a ``new era of a labor relations partnership'' that
    will give them ``a competitive advantage in the refining industry.''
        As the date for transition of the Panama Canal approaches, FMCS
    mediators are playing a major role in the development of constructive,
    collaborative relationships between the Panama Canal Commission and
    unions representing 8,000 employees. This work is viewed as critical to
    the smooth transition of the Canal in 1999 and will likely increase
    over the next two years.
        In fiscal year 1998, mediators will be actively involved in about
    2,600 preventive mediation cases.
                                  arbitration
        Arbitration is used almost universally by management and labor to
    resolve disputes which arise under their collective bargaining
    agreements. This reduces the incidence of both strikes and litigation.
    FMCS maintains a roster of 1,700 private, professional arbitrators.
    Upon request from the parties, FMCS furnishes a list of names from
    which they can choose an arbitrator to hear their case and make a final
    and binding decision. Through this work, FMCS fosters improved contract
    administration. In fiscal year 1996, FMCS issued 30,066 panels of
    arbitrators to the parties.
        In accordance with the National Performance Review, FMCS is
    examining its arbitration operations. Over the last year, we have been
    engaged in a reengineering process. Our goal is to improve the
    efficiency and effectiveness of our service, streamline processes and
    lower costs. This initiative has had the full participation of
    employees in the arbitration office. Upcoming technology improvements
    should provide improved assistance for arbitrators and the labor-
    management community, including electronic access to our services.
        For the first time since 1979, FMCS arbitration rules and
    regulations will be thoroughly reviewed. Proposed changes will be
    published for comment and final, revised regulations will be issued. In
    March we conducted a customer focus group comprised of arbitrators and
    representatives of both labor and management. We sought and received
    valuable input on the proposed rule changes and how we might improve
    our services.
        As authorized by Congress last year, we are preparing to provide
    our arbitration services on a modest fee-for-service basis, with the
    revenue generated to be retained by the Agency and dedicated solely to
    the education and professional development of our workforce. In fiscal
    year 1998, we expect to issue 29,500 panels of arbitrators.
                      labor-management cooperation program
        The Labor Management Cooperation Act of 1978 expanded our charter
    by authorizing FMCS to encourage and support joint labor-management
    cooperative activities designed ``to improve labor-management
    relationships, job security and organizational effectiveness.''
    Congress authorized FMCS to award grants to establish or expand labor-
    management committees. Through these grants, we seek to encourage
    joint, innovative approaches to collaborative labor-management
    relationships and problem-solving. Last year, for example, grants were
    awarded to establish a comprehensive Oklahoma City-wide public school
    labor-management cooperative effort, a statewide Connecticut
    construction industry labor-management council, and a nation-wide
    labor-management committee which will promote the high performance work
    organization concept with major corporations and the International
    Association of Machinists.
        Since 1981, FMCS has awarded almost $15,000,000 to 239 labor-
    management committees. There have been 1,031 applications requesting
    nearly $75,000,000 during the same period. In fiscal year 1998, FMCS is
    requesting $1,741,000 for the Labor-Management Cooperation Program.
    With these funds, we hope to award 18 new grants and nine extensions.
    Customer panels will be used for the third time to review applications.
                         alternative dispute resolution
        Mediators assist governmental agencies in using mediation and other
    forms of conflict resolution as an alternative to litigation and to
    improve government. Our alternative dispute resolution (ADR) services
    include systems design and evaluation, education, training, and
    mentoring, and ``train the trainer'' programs. We also mediate disputes
    within agencies (e.g., age discrimination and other fair employment
    complaints, whistle blower complaints) and between agencies and their
    regulated public (e.g., environmental disputes). A major ADR project in
    1997 is with the Equal Employment Opportunity Commission. In this pilot
    program designed to reduce the EEOC's large case backlog, we will
    mediate private sector discrimination complaints.
        We continue to conduct regulatory or public policy negotiations
    involving other governmental agencies. One, with the Departments of
    Agriculture and Interior, involves contentious and longstanding public
    land use disputes in the northern Minnesota Voyageurs National Park and
    Boundary Waters Canoe Area Wilderness. Any agreement reached by the
    participants to this dialogue will be forwarded to the Minnesota
    congressional delegation for possible legislative action. Also, in
    1996, mediators successfully concluded the largest regulatory
    negotiations process ever held involving the Departments of Interior
    and Health and Human Services and 48 Native American Tribal Councils
    working to develop regulations implementing the Indian Self-
    Determination and Education Assistance Act.
        In fiscal year 1998, we expect to be involved in 75 alternative
    dispute resolution projects. There is growing demand for our ADR
    services. Since funds have never been appropriated, FMCS performs this
    ADR work through interagency reimbursable agreements.
                        objectives for fiscal year 1998
        We intend to continue working to improve our services and
    strengthen performance though customer outreach and feedback, education
    and training of our workforce, technology modernization, development of
    new preventive mediation programs, and performance measurement.
        As required by the Government Performance and Results Act of 1993,
    FMCS will strive to set and achieve outcome-related goals and
    objectives for this agency and to measure our performance in terms of
    results. We believe that the services we provide to the American people
    have tremendous value and that, with the progress we have made over the
    last three years in strengthening our organization, we are well
    positioned to meet future challenges. Our goals for fiscal year 1998
    can be summarized simply:
      --Continuing implementation of our Strategic Action Plan; re-
            evaluating and fine-tuning;
      --Continuing implementation of the FMCS Strategic Information Plan;
            maintaining our technology and keeping pace with innovation;
      --Continuous improvement of the professional skills and abilities of
            our workforce through education and training; creating a
            learning environment;
      --Improved responsiveness to customer needs and interests through the
            use and analysis of customer surveys; and
      --Striving to achieve outcome-related goals and measure performance
            in terms of results.
                               resources required
        To prepare itself for the future, and to remain the premier
    conflict resolution agency, FMCS must hire, train, and retain the most
    qualified workforce possible. Staff must be given the resources needed
    to carry out our important statutory mandates and mission. We will
    continue to do our part, through the programs outlined in this
    submission and through our reinvention efforts, to resolve disputes and
    improve relations between labor and management in the organized sector
    of the economy, to enhance the Nation's economic performance and
    competitive position, and to promote the use of constructive, peaceful
    methods of conflict resolution. To meet the challenges facing us, FMCS
    seeks a full-time equivalent level of 290 and an appropriation of
    $33,481,000 for fiscal year 1998.
        Mr. Chairman, I am deeply grateful to you and this Subcommittee for
    the support you have given FMCS by providing the requisite monies to
    enable us to transform this government agency. Without this crucial
    support, we could not have undertaken the improvement and innovation of
    the past three years. And, we could not have responded as well as we
    have to our customers needs--both business and industry, and labor.
        I will be pleased to respond to any questions you or other Members
    of the Subcommittee may have.
                                    ------

                         Additional Committee Questions

        Question. What would be the potential impact of a freeze at
    the fiscal year 1997 level through the year 2002 on your
    agency's mission as well as staffing levels? Please provide any
    other relevant details.
        Answer. The impact of a freeze at the fiscal year 1997 base
    level of $32,579,000, would result in financial difficulties
    for FMCS. Yearly pay raises and cost increases of approximately
    three percent would have to be absorbed. FMCS would be forced
    to steadily decrease funding for programs, including mediator
    hiring and spending plans associated with the programs, and to
    examine each for possible reductions, delays or elimination. In
    addition, funds for three new preventive mediation programs
    would not be available.
        The current hiring effort has been chiefly directed at
    filling mediator vacancies created by a large number of
    retirements. In the near future we hope to be able to actually
    increase the number of mediators to perform the vital services
    which, based on the initial results of our nationwide customer
    survey, highly satisfy our current customers. In an effort to
    continue to meet and exceed customer expectations, FMCS has
    begun to raise the level of awareness of the mediation and
    other services that we provide and to expand the number of
    customers to whom we provide them. To deliver these services
    requires FMCS to focus on increasing the ratio of mediators
    (including mediator managers)--who directly deliver services to
    the labor-management community--to the total workforce. As
    administrative and support staff have retired or resigned, FMCS
    has generally not replaced them. As of June 1997, the ratio of
    mediators to the total workforce is 72 percent. In September of
    1995 that ratio was 68 percent, and in September 1992 it was 67
    percent. Remaining at the fiscal year 1997 level, FMCS would be
    forced to leave unfilled approximately one-half of all mediator
    vacancies. The current staffing level of 290 FTE would drop by
    at least six to eight FTE a year. Such a reduced level would
    result in at least three to five field stations without
    mediators and an even greater number with drastically reduced
    mediators to handle caseload activity.
        Vital necessities for caseload activity: travel, rent,
    communications, replacement equipment and contractual services
    and support would be greatly reduced. With limited travel
    funds, moving mediators back and forth to areas of critical
    need would no longer be an option.
        The Labor Management Cooperation Program currently has a
    funding level of $1,500,000 for grants. Some or all of these
    grant funds could perhaps be redirected to cover some of the
    other spending items but this has never been done and would not
    be desirable as the vital work of this program would thereby be
    curtailed or eliminated.
        Three new programs to be developed and implemented would
    not be delivered:
      --School yard mediation.--A program to teach meditation skills to
            teachers, so that they in turn can institutionalize the program
            and make conflict resolution techniques, problem solving
            skills, as well as diversity issues, all part of the school
            curriculum.
      --Conflict resolution and cultural diversity.--The demographics of
            the American work force have been changing rapidly and these
            changes will continue in the future. The most rapidly
            increasing groups coming into the labor movement today are
            immigrants, women, and minorities. Initial results from our
            customer survey show that workforce demographics raise critical
            issues in negotiations and workplace relationships. This
            preventive mediation program is designed to build skills to
            enable better management of conflict stemming from diversities
            of cultures in workplaces and to maximize the opportunities for
            enrichment and enhanced organizational performance coming from
            diversity.
      --Putting it back together.--The threat or actual use of strikes as
            an effective tool during negotiations has diminished, and the
            number of strikes has fallen significantly; however, those that
            have occurred have tended to be protracted and bitter. Even
            when a dispute is successfully mediated and a contract is
            reached, the relationship between the company's management and
            its unionized employees is strained, at best. The relationship
            can also suffer without a strike. Excessive grievances or use
            of arbitration and serious breakdown in communication between
            employer and employee concerning workplace conditions can be
            just as damaging. FMCS customers have identified a need for
            this program which provides structured intervention to rebuild
            positive labor-management relations.
        If FMCS were to receive the fiscal year 1997 funding level for the
    next five years, in some parts of the country our work would cease or
    be reduced to an intolerable level. Progress made in recent years on
    strengthening performance, on developing and offering new preventive
    mediation programs, and on ``reinvention'' efforts would be stymied.
    FMCS ability to respond to increasingly demanding customer requests for
    our services would be greatly curtailed by our reduced workforce, and
    time and effort directed at finding sufficient funding for salaries and
    related expenses would drain attention away from our many worthwhile
    projects and activities.
        Question. Has investment in automation improved the efficiency of
    your agency and what steps have you taken, or do you plan to take, to
    address future automation needs?
        Answer. Investment in automation has already significantly
    contributed to improved agency efficiency and will continue to do so.
    FMCS has pursued the adoption of modern information technology as an
    integral part of our effort to create a government that works better
    and costs less. Our Agency Strategic Plan 1995-97 envisions
    ``effective, strategic use of information technology to improve Agency
    mission performance and delivery of high quality services.'' Three
    years ago, less than 25 percent of our mediators had access to
    computers, only a third of the Agency's field offices were equipped
    with fax machines, and there was limited internal communications
    linkage. Reports were being completed on typewriters, and many casework
    files and reports were being transmitted by mail. Following the
    issuance of the Report of the Mediator Task Force on the Future of FMCS
    in July 1994, a commitment was made by top leadership to upgrade the
    Agency's information and communications technology.
        In fiscal years 1996 and 1997, funding was provided by Congress to
    complete our technology modernization within two years, fully integrate
    the information system throughout the Agency and its field offices, and
    reduce the field offices' reliance on traditional clerical support.
        Over the last 18 months we have transformed our information
    technology capabilities. As of today, all mediators are now equipped
    with computers--either desk top or lap top. Our e-mail system is
    operational and has tremendously improved our internal communications.
    Field offices have now been equipped with fax machines. Effective
    April, 1, 1997, we introduced an intranet system, providing a fully
    integrated information system throughout the Agency and its field
    offices. This will enhance agency communications, broaden access to
    educational resources, contribute to more effective and efficient
    operations, reduce reliance on traditional clerical support, and enable
    us to perform better. It will allow electronic filing of travel
    vouchers and itineraries, and provide capability to send and receive e-
    mail and faxes. It will also provide access to our growing resource
    clearinghouse containing training program curricula, books, articles,
    training materials, videos and other information on collective
    bargaining, labor management relations and partnerships, conflict
    resolution, negotiated rulemaking and resolution of EEO disputes.
    Training in the system will continue intensively during the year. By
    October 1, we will complete the switch to a fully electronic--paperless
    case management system, covering assignments, reporting and tracking of
    all mediation case activity. On April 1, 1997, FMCS also went on-line
    with an Internet home page at--www.fmcs.gov--which provides the labor-
    management community and others with information on our services and
    activities.
        Automation has allowed us to reduce the number of field clerical
    staff from 18 (two in each of the nine prior district offices) to 14
    (on average 2.8 in each of the five current regions). As stated, as of
    April 1, 1977, all of our mediator staff now have computers. For many,
    this is a new experience. They will be receiving intensive training in
    the technology over the summer and, by October 1, all will be required
    to conduct all case administration activity electronically. Field
    clerical staff will be critical during this transition in providing
    instruction to mediators struggling to learn the new technology. It is
    anticipated that once all of our mediator staff become adept at using
    their new computers the need for field support staff may decrease
    further.
        For the last 14 months, FMCS has been proceeding with
    ``reinvention,'' or reengineering, efforts in its headquarters,
    concentrating on those offices which are highly labor-intensive and
    technology dependent, e.g., budget and finance, arbitration, and notice
    processing. We plan to introduce new technologies to broaden means of
    access to our services. We have conducted a very informal survey to
    determine the current ability and interest among the parties in taking
    advantage of electronic filing options. We are studying ways to provide
    the capability to labor and management parties to electronically file
    with FMCS the statutorily required notice of contract expiration and
    the request for arbitration services. This would both ease filing
    requirements for the parties and also decrease the time spent by staff
    in inputting data from written forms submitted today by the parties.
    These efforts should definitely result in greater efficiencies as well
    as better service.
        Our goal in fiscal year 1998, is for our Arbitration Services to
    have the capability for arbitrators to interact with FMCS
    electronically when submitting roster applications or when updating
    biographical information. Likewise parties will be able to access the
    FMCS home page to request a panel of arbitrators. In addition,
    arbitrators can update and post information to the FMCS web page
    regarding the status of a case, and the parties will be able to access
    that information. Notices to arbitrators and parties will be
    automatically generated when requirements have not been met.
        We are currently developing a strategy for upgrading and
    integrating the remaining FMCS systems such as procurement and property
    management with our core financial system. Fundamental to our
    information technology plan is a commitment to implement no new
    technology without comprehensive training to assure effective usage and
    to maintain and increase proficiency.
        FMCS has already dramatically transformed its information
    technology (IT) capabilities. Our future plans include staying current
    with and adapting to innovation so that we may continue to enhance
    Agency communications, broaden awareness of and access to educational
    resources, provide more effective and efficient operations, and deliver
    high quality services. We plan to incorporate IT outcome measurement
    into our Government Performance and Results Act (GPRA) reporting.

      DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
              RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1998

                                  ----------

                                           U.S. Senate,
               Subcommittee of the Committee on Appropriations,
                                                        Washington, DC.

                           NONDEPARTMENTAL WITNESSES

        [Clerk's note.--The subcommittee was unable to hold
    hearings on nondepartmental witnesses, the statements and
    letters of those submitting written testimony are as follows:]

                              DEPARTMENT OF LABOR

    Prepared Statement of the Association of Outplacement Consulting Firms
                             International (AOCFI)
        The Association of Outplacement Consulting Firms International
    (AOCFI) is pleased to submit this testimony to the Labor, HHS, and
    Education, and Related Agencies Subcommittee on the funding and
    operations of the Department of Labor's Dislocated Worker Assistance
    program and the provision of job search assistance through the
    workforce development system.
        The outplacement industry can help this Committee, this Congress,
    and the workforce development system save the American taxpayer hard-
    earned tax dollars and at the same time provide the American worker
    with the best available job search assistance. This can be accomplished
    by the outsourcing of job search assistance from public sector programs
    to private outplacement firms. For every dollar spent per worker
    through Dislocated Worker Assistance, U.S. outplacement firms charge at
    least 50 cents less. For every 100 workers placed through Dislocated
    Worker Assistance, U.S. outplacement firms place from 25 to 50 workers
    more. Combining the lower cost and higher placement rate in the private
    sector, this represents a 200 to 300 percent improvement that has not
    been taken advantage of by the Department and the workforce development
    system.
        No one doubts the benefits of professional outplacement services.
    Outplacement assistance has the obvious economic benefit of putting
    workers back into productive activities and helps keep down the public
    and social costs associated with unemployment. There is, however, a
    reluctance on the part of the public sector to fully utilize private,
    for-profit firms. AOCFI urges this Committee to direct the Department
    of Labor to take the necessary leadership role with the workforce
    development system to achieve this public-to-private outsourcing.
    Private sector service providers can offer dislocated workers services
    second to none and are ready, willing and able to serve those workers
    who require assistance through publicly-funded programs.
    The outplacement industry provides job search assistance to the
            American worker at no cost to the American taxpayer
        The private, for-profit outplacement industry has served the
    American worker for the past three decades, and since 1992 has helped
    place over one million workers each year into new jobs within an
    average of 6 weeks after entering our programs. The average cost for
    placing all of these workers was $700 per individual at a placement
    rate of 90-plus percent. All of this is done at no cost to the American
    taxpayer. Compare this to the Department's own estimates of $2,000 to
    $4,300 per worker with a placement rate of between 40 to 70 percent for
    workers served through Dislocated Worker Assistance.
        Private outplacement firms are hired by corporate employers and
    serve dislocated workers by providing job search assistance that can
    range from help in identifying job openings, to classes on resume
    writing and interviewing skills, to individual counseling. We serve all
    workers, from management to the shop floor; in fact, we offer job
    search assistance to as many hourly wage earners as we do salaried
    workers.
        We are a very competitive industry, and each of our member firms
    work hard at delivering a service that will earn them new business in
    the future. Our performance has contributed to an increased willingness
    among employers to use outplacement services as a way to help workers
    when lay-offs must occur. In fact, outplacement is an important
    component of corporate responsibility at the time of downsizing, and it
    is a responsibility the employer has shown an ability to pay for.
        Increasingly, the public sector, from the Department of Labor to
    local workforce development programs are aggressively marketing their
    services, including outplacement services, to corporate employers as
    ``no cost'' options to the private sector. The real cost, however, is
    borne by the American taxpayer. An additional cost is borne by the
    unemployed worker who is required to take second best in job search
    assistance. There is no legitimate public policy reason to shift the
    burden of providing outplacement services and job search assistance
    from corporate employers to the American taxpayer. Nor is there any
    legitimate reason to support a public program that attempts to
    duplicate services available in the private sector. This increases the
    burden on public programs, creates pressures for larger funding levels,
    and takes the focus of public programs away from the truly needy--those
    hard core unemployed workers in need of a variety of social services
    and intense skills development.
        AOCFI believes that new priorities and commitments relating to the
    provision of outplacement assistance will create real opportunities to
    reduce current funding levels and at the same time offer job search
    assistance that will place more Americans into new jobs sooner.
      --Government Programs Should Focus on the Hard Core Unemployed.--
            During the current period of record employment levels, with
            unemployment at an all time low, and as part of our efforts to
            balance the federal budget, this Committee should reduce the
            level of funding for job search assistance available through
            Dislocated Worker Assistance and direct an appropriately
            reduced level of taxpayer dollars to the hardcore unemployed.
      --Private Outplacement Firms Should be Utilized for Offering
            Outplacement and Job Search Assistance.--For employable workers
            who may need publicly-funded assistance to find new employment,
            local workforce development systems should be required to
            outsource their needs to private outplacement firms. This
            Committee should direct the Department of Labor to take the
            leadership role necessary to achieve this public-to-private
            outsourcing. Private outplacement firms can place more workers
            at less cost than in-house public sector programs.
      --Utilizing the Private Sector Results in Greater Flexibility and
            Reduced Budget Commitments.--Congress should not fund programs
            and activities that duplicate resources and capabilities that
            exist in the private sector. This is an inappropriate use of
            taxpayer dollars and government programs simply do not match
            the effectiveness of our industry. Requiring public programs to
            outsource to the private sector allows this Committee to
            respond with appropriate levels of support for the unemployed
            in need of job search assistance. It also avoids the creation
            of a permanent bureaucracy that will require long-term
            commitments and impose increasing demands for federal funding.
    The dislocated worker should not be forced to settle for Second Best
        Unless this Committee believes that a government-run, in-house
    program can outperform the private service sector in quality of
    services and price, it has a responsibility to require the workforce
    development system to utilize the services of private outplacement
    firms through Dislocated Worker Assistance. The goal of the program is
    to provide services to the American worker, not to create and preserve
    public sector programs.
        There should be no hesitation to save money for the American
    taxpayer and provide the best outplacement service possible to the
    American job seeker.
      --The Department and local workforce development programs should have
            no qualms in partnering with private, for-profit firms.
      --The Department should take a leadership role in realizing savings
            and providing the best service possible.
      --The expertise and capabilities already exist in the private sector,
            and outsourcing to private, for-profit firms is the most cost-
            effective way to provide job search assistance to the
            dislocated worker.
    As more corporations send their workers to one stops and other state
            and local programs, the American taxpayer will be required to
            carry an increasing burden of serving dislocated workers
        As the public sector markets its programs as alternatives to
    private sector offerings and more corporate employers choose to send
    their workers to state and local programs and take advantage of ``no-
    fee'', publicly-funded job search assistance, the American taxpayer
    will be required to support services that are far too costly and
    inefficient.
        Greater reliance on public programs like Displaced Worker
    Assistance will not solve any problems; rather, it will create a
    bureaucracy that has proven itself unable to deliver services that
    workers deserve and should have access to through the private sector.
    The natural result of this will be the creation of a public works
    program with a mandate it cannot achieve.
        There is no valid public policy reason to reproduce the services
    offered by the private sector. It misses the ready opportunity to
    realize significant savings by partnering with private firms. It also
    cheats the American worker by denying the very best re-employment
    assistance we as a country have to offer.
        The Department should concentrate its efforts on improving the
    performance of those programs that are intended to benefit the hard-
    core unemployed. Building a first-class program for this group is
    challenge enough for the workforce development system.
    The taxpayer will realize significant cost savings if this committee
            requires the workforce development system to partner with the
            private, for-profit sector in the provision of job search and
            outplacement assistance to dislocated workers
        The private outplacement industry can help the Department of Labor
    realize significant savings and offer the American worker quality job
    search assistance. At a time when the public is calling for a balanced
    budget and less government, it is most appropriate to save tax dollars,
    reduce costs, and improve services.
        By outsourcing to the private sector, programs supported by the
    Dislocated Worker Assistance program will be able to focus their
    internal competencies on the hard core unemployable. This would allow
    the use of the private sector as and when needed, providing through
    public-to-private outsourcing ``just in time'' outplacement services to
    dislocated workers. During times of high unemployment, more outsourcing
    will be necessary. During times of low unemployment and downsizings,
    less outsourcing will be required. This represents a flexibility and
    efficiency that both this Committee and the Department of Labor should
    work towards. Funding levels for job search assistance will match
    actual needs and the public-to-private outsourcing structure will avoid
    the long-term and irreversible commitment required to sustain permanent
    bureaucracies.
        This Committee should direct the Department of Labor to stop
    duplicating the job search assistance already available in the private
    sector and to outsource services to outplacement firms. Duplication of
    what the private sector does is a loss to the American taxpayer and the
    dislocated worker. Partnering with the private sector is a win-win
    situation for everyone involved.
    AOCFI has received a grant from the Department of Labor that will
            support workshops between the public and private sectors in six
            major labor market areas
        AOCFI has been awarded a grant to undertake six workshops that will
    bring together public sector officials and private outplacement firms.
    These will be conducted in major labor market areas to explore
    effective practices that will enable the public sector to outsource to
    private sector firms. AOCFI believes that much of the resistance to
    outsourcing in the workforce development system derives from a lack of
    leadership from the Department of Labor, a lack of focus by the public
    sector on its core competencies of addressing the needs of the hard
    core unemployed, and a lack of understanding regarding the availability
    and capabilities of private outplacement firms to deliver outplacement
    assistance to dislocated workers who are forced to turn to publicly-
    funded programs.
        To overcome this systemic resistance, workshop participants will
    introduce their respective sectors, identifying their respective core
    competencies as service providers to dislocated workers. Case studies
    of effective public-to-private outsourcing, based on recent and current
    work between the public and private sectors, will also be presented at
    the workshops by local private sector practitioners and public sector
    administrators. In order for these to be truly effective, the
    Department of Labor must take a clear and unambiguous position of
    supporting the goal of outsourcing job search needs to private
    outplacement firms. Equally important will be the commitment of this
    Committee to involve the private sector in the provision of services
    through publicly-funded programs.
        It is hoped that these workshops will demonstrate the value in
    outsourcing outplacement needs to the private sector. In order to
    accomplish the goal of lasting communication between the sectors and
    meaningful levels of outsourcing, these workshops must be duplicated in
    additional labor market areas. AOCFI urges this Committee to support
    the funding of additional workshops and the other related activities as
    an investment that will result in achieving maximum efficiencies in
    program expenditures and the delivery of quality service to dislocated
    workers.
    Conclusion
        AOCFI urges this Committee to take aggressive steps in identifying
    ways to reduce unnecessary expenditures and to spend taxpayer dollars
    more effectively.
      --The workforce development system should focus its attention on and
            the Appropriations Committee should direct program funding to
            the hardcore unemployed. These are the people who need the
            basic skills-building that will make them employable, and these
            are the programs not otherwise supported in the marketplace.
      --Private outplacement firms are available to provide the job search
            services that the employable American worker requires and
            deserves, but right now private outplacement firms are not
            given the opportunity to provide these services. Additional
            workshops between the public and private sectors, along with
            unambiguous leadership from the Department of Labor, will help
            achieve the public-to-private outsourcing necessary to allow
            private sector outplacement firms to assist dislocated workers.
      --Partnering with the private sector is a cost-effective way for the
            workforce development system to offer the best available job
            search assistance and outplacement services to dislocated
            workers. The outplacement industry was built upon a tradition
            of serving the American worker with the highest quality job
            search assistance and utilization of our services will save the
            American taxpayer money and provide better job search services
            to the American worker.
        There is no comparison between the quality or costs of services
    offered; the outplacement industry has an accomplished track record of
    worker placement, and private outplacement firms provide services
    second to none. These skills and efficiencies should be made available
    to the American worker.
                                     ______

     Prepared Statement of James B. Hubbard, Director, National Economics
                        Commission, The American Legion
        Mr. Chairman and Members of the Subcommittee:The American Legion
    appreciates the opportunity to present its views on the
    Administration's proposed budget for the Veterans Employment and
    Training Service for fiscal year 1998. In addition, The American Legion
    would like to express its views regarding the President's significant
    spending increases for higher education programs.
        Regarding the overall fiscal year 1998 budget, The American Legion
    is deeply disapointed that the President would make proposed increases
    for higher education programs and not include increases in veterans
    educational benefits. Mr. Chairman, to be eligible for the Montgomery
    GI Bill, all first term service members must agree to an eight year
    military obligation, relinquish personnel rights and freedoms and
    subject themselves to the Uniformed Code of Military Justice. In
    addition, service members must maintain certain physical and
    professional military educational standards and face the reality of
    frequent deployments in often hostile environments. Active duty members
    must contribute a $1,200 cash contribution to receive benefits and
    National Guard and reserve members receive less benefits but make no
    cash contribution.
        The American Legion believes if any group of young Americans should
    receive an increase in educational spending, it should be veterans. Mr.
    Chairman and Members of this Subcommittee, veterans have earned their
    educational benefits through time, sweat equity and sometimes blood and
    bodily injury. I hope this Subcommittee and Congress will consider
    these points regarding education spending as the debate on the
    President's fiscal year 1998 budget proposal moves forward.
        Mr. Chairman, an apparently little known government law enacted by
    Congress has proven a point made by some of us over a long period of
    time. The Veterans' Employment and Training Service (VETS) is an agency
    which works. It works for veterans and it works for employers. The
    Government Performance and Results Act (GPRA) has required agencies to
    document the money they spend and the results they achieve. By any
    standard, VETS has performed admirably. For fiscal year 1996, the money
    appropriated for Local Veterans Employment Representatives and Disabled
    Veterans Outreach Program specialists, has placed well over 327,000
    veterans into careers.
        The American Legion supports funding for the Veterans' Employment
    and Training Service in the following amounts:
      --Local Veterans Employment Representatives are the people charged
            with representing veterans to employers. Their job becomes
            larger as the agency shifts some emphasis to marketing. The
            American Legion supports an appropriation of $77.1 million,
            which will place 152,000 veterans into jobs
      --Disabled Veterans Outreach Program Specialists are those who seek
            out disabled veterans and attempt to match their skills and
            training with available positions. If the skills do not match,
            training is scheduled to provide skills which can be useful.
            The American Legion seeks $80.1 million for this program, which
            will place 156,000 veterans into jobs.
      --The Homeless Veterans Reintegration Project was canceled last year
            due to a funding rescission. It was reauthorized in 1996 by
            Public Law 104-275. The purpose of this legislation is to
            locate homeless veterans, and provide them with the type of
            care and guidance so as to find them shelter, and get them job
            ready and placed in employment. The American Legion recommends
            this program be funded at $2.5 million, which will serve 4,000
            veterans with 2,000 being placed in employment.
      --The Job Training Partnership Act Veterans Programs are designed to
            provide the necessary training opportunities for veterans so as
            to get them into career positions. This money is usually spent
            in the form of competitive grants to the states, with some held
            by the agency for special projects. The American Legion
            supports an appropriation of $7.3 million for this important
            work.
      --Federal Administration requirements for this agency will not change
            much from the FTE authorization of the previous year. It should
            be recognized that a new mission of this agency's federal staff
            is the investigation of cases under the Uniformed Services
            Employment and Reemployment Rights Act. These investigations
            are carried out by federal staff. The act helps members of the
            National Guard and armed forces reserves who are victims of
            employment discrimination. The American Legion supports funding
            for federal staff of $22.9 million which will support 245
            employees.
      --The National Veterans Training Institute is the glue which holds
            this whole veterans' employment system together. Because of the
            standardized training provided by NVTI, a veteran in
            Pennsylvania gets the same quality of service that a veteran in
            Florida or West Virginia receives. The President has requested
            $2.0 million for fiscal year 1998. The American Legion
            recommends $3.0 in order to institute the marketing courses
            necessary to begin the new strategic plan. This effort is
            critical to easing the transition of people with good skills
            from the military into civilian society.
        The American Legion would like to make you aware of one other issue
    of concern to this Subcommittee. By way of background, the armed forces
    of the United States are releasing about 250,000 people from active
    duty each year and will continue to do so for the foreseeable future.
    Historically, these veterans have become some of the more productive
    members of our society, provided they are given the right
    opportunities. They are stable, with over 50 percent married. They know
    about leadership. They have an excellent work ethic. They show
    initiative and are very familiar with teamwork. They are certifiably
    drug free. In short, they are a national resource. The problem is,
    unfortunately, that in too many cases the American workforce is not
    able to take advantage of their skills.
        These veterans have attended some of the finest technical and
    professional training schools in the world. They are graduates with
    experience in health care, police and investigative work, electronics,
    computers, engineering, drafting, air traffic control, nuclear power
    plant operation, mechanics, carpentry, and many other fields. Many of
    their skills require some type of license or certificate to find a
    career in the civilian workforce. Often, this license or certificate
    requires schooling which has already been completed by attendance at an
    armed forces training institution. Unfortunately, in all too many
    cases, the agencies which issue the license or certificate do not
    recognize the training or experience already completed. As an example,
    a medic who treated gunshot wounds in Operation Desert Storm is
    qualified as a medic, but will not be certified as an emergency medical
    technician in our nation's cities without additional, redundant
    schooling.
        Another example is that of a former member of the U.S. Air Force
    trained at Keesler Air Force Base as an air traffic controller. In 1983
    he was pulled from his controller duty at an Air Force airfield tower
    and sent to a civilian airfield tower to perform the same duty. During
    his time at the civilian airfield he was recruited by a supervisor from
    the Federal Aviation Administration (FAA) to join the FAA as a
    controller when he left the Air Force. He did so, but only after
    attending an FAA school, for which he was forced to use his VA
    educational benefits. His studies at the FAA school duplicated the Air
    Force training he received. The FAA did not recognize the air traffic
    control training provided by the Air Force, despite the fact that he
    performed duties with the FAA while serving in the military.
        The American Legion has reason to believe that this problem is
    large and widespread. In order to determine its size, we have requested
    the United States Department of Labor to undertake a study to determine
    what skills, for which the Department of Defense provides training, are
    directly applicable to a civilian career and for which a license or
    certificate is required. This study, which will examine two areas of
    skills licensing to determine the extent of the problem, is well
    underway. Once this information is obtained, it will be relatively easy
    to approach the agencies and professional organizations and perhaps the
    Congress with proposals to relieve these previously trained and
    experienced people of the burden of redundant schooling. When the
    results are available in about six months, we would be pleased to share
    them with you.
        The lack of recognition of skills learned in the armed forces by
    civilian licensing authorities results in recently separated veterans,
    particularly those who are 20 to 34 years of age, suffering the highest
    unemployment rates of all veterans. The unemployment rate for this
    group is in the two digit range, as it has been for years (currently
    11.8 percent). VETS labors to help these young, recently separated
    veterans with a multitude of integrated services, to prevent their
    unemployment and ease their transition to careers in the civilian labor
    market.
        Congress should be concerned for several reasons. In the first
    place, if your mission is to standardize training across government,
    here is a clear case of skills taught to a set of standards recognized
    by one segment of the workforce (military), which standards and maybe
    even some of the skills are not recognized by another segment
    (civilian). This is clearly not fair to the people who were trained by
    the military. Nor is it fair to either the businesses who hire these
    people and then pay for redundant training or the taxpayers who pay for
    redundant training either through GI Bill benefits or through
    additional federal civilian schooling such as those run under the
    supervision of the Federal Aviation Administration.
        In the second place, the men and women who leave the armed forces,
    as has been mentioned, are enormously productive. Placing artificial
    barriers to employment in front of them The American Legion views as a
    drag on the economy. They need a clear path into the workplace where
    they can become productive, taxpaying members of our society.
        Mr. Chairman, The American Legion is concerned that the important
    work funded and accomplished by the Veterans' Employment and Training
    Service is not recognized by those who have an important influence on
    the future of veterans in American society. Prior to the creation of
    VETS, veterans suffered higher unemployment rates than their civilian
    counterparts. Before 1983, veterans' employment assistance programs
    were administered through block grants to the states. Because states
    failed to provide proper employment assistance to veterans, the Office
    of the Assistant Secretary for the Veterans Employment and Training
    Service was created within the Department of Labor. The American Legion
    believes that veterans have special needs and face unique problems when
    searching for employment, VETS meets these special needs.
        Mr. Chairman, that concludes our statement.
                                     ______

             Prepared Statement of the National Job Corps Coalition
        Mr. Chairman, it is an honor to submit to you and the members of
    the Subcommittee our testimony and request for full funding of Job
    Corps in fiscal year 1998. The National Job Corps Coalition is aware of
    the challenges confronting you and the members of the committee given
    the diminishing resources available for discretionary programs. Your
    support for full funding of Job Corps is testimony to your commitment
    to reach the hardest to serve population in this country--the
    economically disadvantaged young people with multiple barriers to
    employment who are eligible for Job Corps. Last year alone, your
    support helped 68,540 young men and women become productive members of
    society through their participation in Job Corps. Your leadership has
    allowed these young people to turn their lives around. For that you
    have our gratitude and utmost admiration.
        Mr. Chairman and members of the Subcommittee, with diminishing
    resources available to fund education and training programs and within
    the context of efforts to balance the federal budget, Congress must
    focus its investment on programs that work. Job Corps is a cost-
    effective, time-tested means of addressing our nation's growing need to
    educate and train economically disadvantaged youth. For 33 years, Job
    Corps has consistently demonstrated its ability to achieve positive
    results working with America's most difficult to serve youth. During
    the past year, Program Year 1995 (July 1995-June 1996), 75 percent of
    all Job Corps participants got jobs, enlisted in the military, or
    enrolled in higher education. When one considers the cost to our
    society of the lifetimes of crime, unemployment, or welfare that these
    young people might otherwise have led, it becomes apparent that Job
    Corps is a sound investment that merits continued support.
        The Job Corps 50/50 Plan for fiscal year 1998 requests $1.268
    billion in funding for Job Corps. This includes $1.115 billion for base
    level operations at 118 Job Corps centers. This will ensure that Job
    Corps can provide its comprehensive, residential education to
    approximately 69,700 disadvantaged youth each year. With this level of
    operational funding, the Committee will allow all of the new Job Corps
    centers that have been funded during the last four years to begin
    operating by the end of 1998.
        Historically, Job Corps centers have been located in previously
    used facilities such as former hotels, military bases, orphanages, and
    seminaries. More than 50 percent percent of Job Corps facilities are
    more than 30 years old. As a result, many Job Corps facilities require
    intensive maintenance on a regular basis to keep them functioning to
    minimum standards, as well as to stave off further deterioration.
        During the 1970s and 1980s, Job Corps' facility repair and
    rehabilitation needs were inadequately funded. Dormitories, classrooms,
    and other buildings, many of which were old when Job Corps acquired
    them, often remained in service beyond their useful lives. The failure
    to sufficiently fund Job Corps facility needs has led to the current
    $306 million backlog of necessary facility improvements. This has
    adversely affected program performance at some Job Corps centers. The
    fiscal year 1998 50/50 Plan request of $90,991,000 for facility
    construction and rehabilitation will help to prevent continued
    deterioration of older Job Corps facilities and allow inroads to be
    made into the current backlog of unmet facility needs.
        The Atlanta, Cleveland, Cincinnati, Jacksonville, and Little Rock
    Job Corps centers need to be relocated because they are housed in
    cramped facilities on small sites where needed modifications cannot be
    accomplished. In the long term, the relocation of these centers will
    remove impediments that their current facilities present to higher
    performance. This will also result in reduced maintenance costs. The
    $20 million requested for fiscal year 1998 will allow the relocation of
    the Cleveland Job Corps Center to be completed. Any funds remaining
    from this project will be used to begin the relocation of one of the
    remaining four centers.
        Job Corps needs to prepare its students for high growth occupations
    and to meet industry skill standards. In order to professionalize Job
    Corps' vocational offerings for the 21st century and to better equip
    students for the transition from school to work, Job Corps must
    identify and offer emerging high technology and high wage occupations
    that will allow its students greater placement opportunities.
        At too many Job Corps centers vocational training is conducted with
    outdated or obsolete tools, equipment, and materials that impede the
    ability of students to meet the demands of today's job market. By
    upgrading Job Corps' vocational offerings and modernizing its equipment
    and classrooms, the Committee will enable the program to widely improve
    its vocational training. These improvements will generate more stable,
    better paying jobs for growing numbers of Job Corps students well into
    the 21st century. They will also result in training that better meets
    the needs of employers.
        The $15 million that Congress invests in modernizing Job Corps'
    vocational training will enable Job Corps to intensify its existing
    efforts to review, update and modernize its vocational offerings,
    equipment and programs over a five year period. It is estimated that
    this process will lead to the conversion of approximately half of all
    vocational classes, facilities and equipment in Job Corps to new or
    substantially updated occupations.
        Most Job Corps centers have been in operation since the late 1960's
    and early 1970's. The replacement of equipment and furnishings used in
    classrooms and dormitories has consistently received low budgetary
    priority during the intervening years. As a consequence, many centers
    are badly in need of funds to replace worn out furnishings and
    equipment. The Job Corps program is successful in training students
    because it attempts to simulate a workplace environment in its
    classrooms and shops.
        In order to create such an environment, serviceable equipment and
    furnishings must be available, including computers, printers, tables,
    chairs, desks, and file cabinets. Replacement of worn furniture in
    dormitories is necessary to ensure that Job Corps students feel
    comfortable and safe in their living environment. An investment of $5
    million in equipment and furnishings in Job Corps' classrooms and
    dormitories will enhance vocational training. It will also help Job
    Corps centers to retain even more students who will tend to experience
    better outcomes in terms of learning gains, GED attainment, and quality
    job placement.
        As more and more Americans strive to make the transition from
    welfare to work, cost-effective education and training programs will be
    vital to their success. Job Corps is a national education and training
    program with a long history of results that justify its cost.
    Presently, Job Corps is unable to meet the tremendous need for its
    comprehensive services. Under welfare reform, this need will become
    even more acute.
        By providing $12 million in targeted funds to expand training slots
    at existing high performing Job Corps centers, the Committee will be
    making a cost-effective investment. For the one time cost of
    rehabilitating a building, constructing a dormitory, or developing a
    satellite center, the Committee will allow a few of the most
    successful, best managed Job Corps centers to provide their highly
    effective residential education and training services to even more
    youths each year. This approach fulfills Congressional intent, as
    stated in House Report 104-659, ``to examine low-cost options for
    serving more at-risk youth through Job Corps, such as expanding slots
    at existing high performing centers or constructing satellite centers
    in proximity to existing high performing centers.'' This approach is
    also more economical and will take substantially less time to implement
    than would constructing new Job Corps centers.
        More and more Job Corps students are single parents who cannot
    enroll in the program unless provisions for their children are made.
    Under welfare reform, the number of single parents who could benefit
    from Job Corps' residential services will grow. Without additional
    child care facilities to serve the children of potential enrollees, the
    needs of this population may go unmet.
        A one-time infusion of $10 million in construction funds will allow
    Job Corps to build 10 new child care facilities on Job Corps campuses.
    By expanding its collaboration with Head Start to operate these new
    facilities, Job Corps will be able to cost-effectively serve more
    single parents.
        In the past, the Committee has urged the Department of Labor to
    continue to crack down on poor-performing Job Corps centers. The
    National Job Corps Coalition supports the many steps that the
    Department has taken in recent years to respond to this concern
    including:
      --Providing intensive on-site technical assistance by teams of
            program experts.
      --Changing the operators of 9 Job Corps centers since July 1, 1995.
      --Awarding contracts for the operation of 11 Job Corps centers to six
            companies that never before operated Job Corps centers
      --Revising the procurement system for center contractors to place
            increased weight on past performance
      --Contracting out the operation of the Iroquois Job Corps center,
            formerly operated by the Department of Interior.
      --In partnership with the National Park Service, closing the Gateway
            Job Corps Civilian Conservation Center in June 1997.
        In addition, Job Corps has worked with the Office of the Inspector
    General to identify best practices of successful Job Corps centers. The
    OIG report issued in 1996 was shared with every Job Corps center. Job
    Corps is currently undertaking a best practices review of placement
    contractors in cooperation with the OIG. The resulting report will be
    disseminated to the Job Corps community
         The National Job Corps Coalition is also very pleased that two Job
    Corps centers--Hubert H. Humphrey in St. Paul, Minnesota, and Denison
    in Iowa--were recognized along with 16 other exemplary youth programs
    by the Promising and Effective Practices Network (PEPNet) last year for
    their effective practice in youth employment and development. Job Corps
    will continue to disseminate best practices as an important tool in
    continuously improving performance among its centers.
        Job Corps is currently able to serve only a small portion of its
    target population. By funding the Job Corps 50/50 Plan for fiscal year
    1998 at $1.268 billion, the Committee will help to reduce the number of
    Americans who depend on public assistance by breaking the cycle of
    poverty and welfare dependence. This will help provide a proven
    education and training program that capitalizes on public-private
    partnerships, quality programs, and fiscal integrity to benefit the
    youth of our nation. Moreover, this will help to keep America
    competitive by educating and training populations of youth who will
    comprise a significant portion of the nation's future work force.
        Mr. Chairman, Job Corps needs your continued support, as do the
    more than 68,000 young people each year whom it serves. Without your
    leadership and support for Job Corps, thousands of young people would
    be deprived of the means to pull themselves away from the obstacles of
    crime, welfare dependency, and chronic unemployment. You have been
    steadfast and unwavering in ensuring that these young men and women are
    provided with the assistance they need in Job Corps to lead independent
    lives. Thank you once again for this opportunity to submit testimony on
    behalf of Job Corps. You are a true Job Corps champion.
                                     ______

      Prepared Statement of W. Ron Allen, President, National Congress of
                                American Indians
                                  introduction
        Chairman Specter, Senator Harkin and distinguished members of the
    Appropriations Subcommittee on Labor, Health and Human Services, and
    Education. Thank you for the opportunity to submit testimony regarding
    the President's fiscal year 1998 budget request for the Departments of
    Labor, Health and Human Services, and Education. My name is W. Ron
    Allen. I am President of the National Congress of American Indians
    (NCAI), the oldest, largest and most representative Indian organization
    in the nation, and Chairman of the Jamestown S'Klallam Tribe located in
    Washington State. NCAI was organized in 1944 in response to termination
    and assimilation policies and legislation promulgated by the federal
    government which proved to be devastating to Indian Nations and Indian
    people throughout the country. NCAI remains dedicated to advocating
    aggressively on behalf of the interests of our 230 member Tribes on a
    myriad of issues including the critical issue of adequate funding for
    Indian programs.
                             background information
        Mr. Chairman, unfortunately it has been a rare occasion indeed, if
    ever, that programs serving the American Indian and Alaska Native
    population have received the federal funding required to fulfill even
    the most basic needs of Tribal members. Historically, funding for
    Indian programs has lagged far behind the funding of many non-Indian
    programs and this gap only continues to grow. Compared to all other
    sectors of the American populace, American Indians and Alaska Natives
    most often rank at or near the bottom or top of most social and
    economic indicators, whichever is worse. Of the 557 federally-
    recognized Indian Tribes, a great majority of their populations are
    characterized by severe unemployment, high poverty rates, ill-health,
    poor nutrition and sub-standards housing. In 1989, the average
    unemployment rate in Indian country was 52 percent, and by 1990 the
    rate had jumped to 56 percent.\1\ The 1990 Census shows the percentage
    of Indian people living below the poverty line is 31.6 percent, or
    three times the national average.
    ---------------------------------------------------------------------------
        \1\ See generally ``1990 Census of Population--Characteristics of
    American Indians by Tribe and Language'', U.S. Department of Commerce,
    Economic and Statistics Administration, Bureau of Census.
    ---------------------------------------------------------------------------
        In the 104th Congress, Tribes faced extraordinary challenges
    throughout the appropriations process resulting in unprecedented
    reductions in federal Indian program funding that left many Tribes
    facing extreme circumstances. Non-funding ``riders'' attached to
    Interior Appropriations bills reached well past the scope of the
    appropriations process and were interpreted by Indian Country as an
    attempt to diminish Tribal sovereignty and change the basic fabric of
    the federal-Tribal relationship. While we appreciate the commitment to
    balance the federal budget, we maintain that such a laudable initiative
    does not and should not preclude the federal government from fulfilling
    its trust responsibilities to Indian Tribes throughout this great
    nation. In short Mr. Chairman, extraordinary budget reductions in
    federal Indian programs throughout the past two funding cycles have
    created a state of emergency for many Tribal governments. It should
    also be noted that more recently, Congress' conversion of welfare
    entitlement funds into state discretionary funding has added to the
    urgency felt throughout Indian Country.
        Local empowerment, the theme of the 104th Congress' federal
    downsizing and budget balancing initiative, was initially met with
    optimism by Tribes who believed related measures would enhance economic
    opportunities throughout Indian Country, thereby advancing tribal self-
    determination and self-sufficiency. Unfortunately, the result was quite
    the opposite. While the Administration's fiscal year 1996 and fiscal
    year 1997 budget request sought to empower Tribal governments with more
    program and service responsibilities, the Congress drastically reduced
    funding levels for those same programs and services.
        As Congress begins to shape the fiscal year 1998 budget, NCAI urges
    the reversal of the downward direction the annual appropriations
    process has taken on Indian programs. We believe that the President's
    fiscal year 1998 budget request has taken a very positive step in that
    direction.
                the president's fiscal year 1998 budget request
    Department of Labor
        Employment and Training Administration.--The Job Training
    Partnership Act (JTPA) authorizes Section 401 Native American Program
    and a two percent set-aside for Native Americans in the Title II-B
    Summer Youth Employment program. These two provisions are the main
    source of support for employment and training services for Indians,
    Alaska Native and Native Hawaiian workers--the most disadvantaged
    segment of the American work force. The President's fiscal year 1998
    funding request for Section 410 Indian JTPA program is $52.5 million,
    the same level provided in fiscal year 1997. NCAI supports this request
    but recommends that funding be increased to $65 million in fiscal year
    1998. NCAI also supports the fiscal year 1998 request of $871 million
    for the Summer Youth Employment Program, the same level provided for in
    fiscal year 1997. Like last year, the Indian set-aside in fiscal year
    1998 would be approximately $15.8 million. On most Indian reservations,
    this program provides the only source of employing Indian youths.
    Department of Health and Human Services
        The Administration for Native Americans.--NCAI supports the
    President's fiscal year 1998 request of $34.9 million for
    Administration for Native Americans (ANA) operations, but would urge
    Congress to increase this funding level given the success of ANA
    programs and their strong support from Tribal leaders. Although the ANA
    budget is small compared to the total HHS budget or other agencies that
    deal with Indian economic and social development, the budget allocation
    for the ANA is important because of the types of programs it funds,
    rather than its total dollar amount.
        The principle that underlies ANA funding policy is to assist Indian
    Tribes and Native American organizations implement their own strategies
    for growth and development. This policy is the main reason for ANA's
    success and the rationale for NCAI's strong support for the ANA as a
    catalyst for change in Indian Country. By remaining committed to these
    core factors the ANA has been singularly successful in Indian Country
    since its inception. In addition to the large number of communities
    served by this agency, the ANA distinguishes itself by encouraging
    long-term strategies for tribal independence and economic development.
    Unlike other federal programs that originate in and are administered
    from Washington, D.C., ANA stands apart because its programmatic
    priorities are set locally, with appropriate deference to local Tribal
    authorities. While there are considerable pressures on the Congress to
    reduce spending, current and future spending decisions must be made
    with an eye to ensuring that local governments and local populations
    are in a better position to build local capacity and become
    increasingly self-reliant. By recognizing that the tactics that will
    most likely be successful in the long-run are those which maximize
    local needs and stress the primacy of local responsibility, the ANA is
    a model program the federal government would be advised to mimic in
    other realms.
        Administration for Children and Families.--The newly formed Tribal
    Services Division of the Office of Community Services, a division under
    the Department of Health and Human Services (HHS)--Administration for
    Children and Families (ACF), is the Administration's foresight into
    what is necessary at the federal level to ensure fair and just
    treatment of Tribal governments under the Personal Responsibility and
    Work Opportunity Reconciliation Act of 1996 (Public Law 104-193), the
    welfare reform law. However, this Division currently has no direct
    funding source of its own and must borrow scarce resources from other
    agency programs in order to provide any services to Tribal governments.
    HHS Secretary Shalala and the Assistant Secretary for the ACF have
    tried to provide the necessary funding to carry-out the welfare reform
    implementation process in Indian Country, but it has been obvious from
    the beginning that unless Congress authorizes a direct funding source
    for the Tribal Services Division, Indian Tribes will literally be left
    out in the cold in regards to full and complete participation in many
    state welfare plans.
        Funding for the Tribal Services Division is especially critical
    because with the enactment of the welfare reform law comes a myriad of
    unique issues that are of concern to Indian Tribes. Of these, the most
    critical is the ability of Tribes to enjoy equal treatment under the
    law as sovereign governments (similar to states), which will in turn
    nurture meaningful Tribal participation in welfare reform throughout
    Indian Country. Empowerment of Tribal governments only works if federal
    funding levels are there to ensure such transition of powers.
    Unfortunately, the President's fiscal year 1998 budget does not list
    any new discretionary funding sources which would allow for such
    transitions. Taking an entitlement program such as welfare assistance
    and converting it into discretionary block grants to the states creates
    two dilemmas which must be addressed. First, this approach ignores the
    government-to-government relationship that exists between Tribes and
    the federal government. This relationship is built upon pillars of
    trust responsibilities owed to Indian Tribes which include health,
    education and welfare. Unfortunately, the welfare pillar has been
    block-granted to the states with no enforcement provisions that
    protects the federal trust responsibility from state encroachment and
    diminishment. Second, many Tribal communities suffer from the lack of
    adequate infrastructure, economic development and other community
    development factors which would allow for the successful conversion of
    federal welfare programs to the Tribal level. In order for Tribes to
    reach the level of community development necessary to afford the
    capability to administer welfare and other social service programs
    under the law, they must have adequate funding for technical
    assistance, data collection, construction, job training, child care,
    and Tribal enforcement plans.
        Lastly, NCAI has developed a set of Indian amendments to the
    welfare reform law which have been forwarded to Congress. Not only do
    we hope that the recommendations put forth will be considered by
    Congress, but more importantly, that Tribes are given the assurance by
    Congress that necessary funding will be provided to begin the Tribal
    implementation process.
        Administration on Aging.--Within the Older Americans Act (Public
    Law 89-73), there are four provisions that are of special importance to
    Native American elders. The first provision is Title VI: Grants to
    Native Americans. The purpose of this program is to promote the
    delivery of supportive services, including nutrition services to
    American Indians, Alaska Natives, and Native Hawaiians. In fiscal year
    1997, $16 million was appropriated to aging grants for Indian Tribes
    and Native Hawaiian organizations. NCAI requests that the authorized
    level of $30 million be appropriated in fiscal year 1998. This title
    provides key ``front-line'' services for 229 programs serving Indian
    elders residing on reservations, including communal and home-delivered
    meals, transportation, and chore services. On almost every Indian
    reservation, there are no alternate providers.
        The second provision is Title V: Community Service Employment for
    Older Americans. This program provides funds to ten national sponsors,
    including the National Indian Council on Aging (NICOA), to train low
    income elders in community service programs. The program encourages
    timely placement of enrollees into unsubsidized employment. In fiscal
    year 1997, $463 million was appropriated to Title V from which $5.4
    million was allotted to NICOA. This is an especially important program
    for Indian Country because unemployment rates on reservations are
    extremely high. NCAI supports the President's fiscal year 1998 request
    of $463 million.
        The third provision is Title IV: Training, Research, and
    Discretionary Programs. Activities supported under Title IV have helped
    NICOA design and test innovative services, gather information about the
    problems and needs of Indian elders, and train a workforce to meet the
    needs of this rapidly-increasing population. The President's fiscal
    year 1998 request is $4 million. NCAI supports an increase in Title IV
    funding. Additionally, we request a set-aside of $130,000 for the
    training of Title VI Directors. Title IV provides the sole source of
    training funds for Title VI program directors in Indian Country.
        The forth and final provision is Title VII: Allotments for
    Vulnerable Elder Rights Protection Activities, Subtitle B: Native
    American Organization Provisions. This title is intended to assist in
    prioritizing elder rights issues and carrying out elder rights
    protection activities. State programs currently received $4.5 million
    for ombudsman services and $4.7 million for prevention of elder abuse
    programs; however, no funds have ever been provided for Indian
    programs, despite an authorization level of $5 million. With the abuse
    of Indian elders on the rise due largely to deteriorating economic and
    social conditions found in much of Indian Country, prevention programs
    for Tribes throughout the country are desperately needed. We request
    that the full $5 million be appropriated for Tribal programs.
        Health Resources and Services Administration.--Under the Ryan White
    CARE Act Amendments of 1996 (Public Law 104-146), up to 3 percent of
    the amounts appropriated for Titles I, II, III, and IV, not to exceed
    $25 million, is authorized to Title V, the Special Projects of National
    Significance (SPNS) Program. Title V funds are used to address the
    needs of special populations, including the development and evaluation
    of case management programs for Native Americans. The Centers for
    Disease Control and Prevention have reported that as of June 1996 there
    are 1,434 reported and verified diagnosed cases of AIDS among Native
    Americans, an increase of 191 cases for 1995. The report also showed
    that the growth in Native American AIDS cases between 1992 and 1993 was
    larger than any other ethnic group. In fiscal year 1997, the total
    amount of funds available to Native American communities was $1
    million, which funded 3 grants. For fiscal year 1998, the President has
    requested $25 million for the SPNS Program. NCAI is concern that Native
    American communities are not being funded to the extent that the
    increase in the overall Title would lead us to expect. We request that
    a set-aside under Ryan White Title V is established that equals no less
    than $3 million to provide AIDS care for Native Americans.
    Department of Education
        Office of Indian Education (OIE).--For fiscal year 1998, $59.75 has
    been requested to fund formula grants to Local Education Agencies
    (LEA's) and $2.9 million for program administration for OIE. For the
    last two years, no funding has been appropriated to fund OIE's
    discretionary grant programs and fellowship program, and the National
    Advisory Council on Indian Education (NACIE). NCAI supports full
    funding of $83 million which would reinstate funding of these programs.
    These programs have proven successful in helping American Indian and
    Alaska Native students in continuing their education beyond high
    school. Also, although NCAI supports the President's request of
    $200,000 to fund the Presidential Executive Order on Tribal-Controlled
    Community College which has been designated to come out of OIE funding
    we would like to see the funding level increased to $400,000 with the
    entire amount covered by a non-OIE funding source.
        Other DOE Indian Education Related Programs.--NCAI supports the
    funding recommendations of the National Indian Education Association
    (NIEA) for other Indian education-related programs in the Department of
    Education, including Goals 2000, School-to-Work Opportunities, Title I,
    Impact Aid, Education for Homeless Children and Youth, Bilingual
    Education, State Special Education Grants, State Special Education for
    Infants and Families Grants, Technology Literacy Challenge Fund,
    Vocational Rehabilitation State Grants, and, Vocational Education.
        Proposed National School Construction Initiative.--NCAI supports
    the recommendation of Interior Secretary Bruce Babbitt to the Office of
    Management and Budget to include a 10 percent set-aside for schools
    funded by the Bureau of Indian Affairs (BIA) rather than the one
    percent set-aside included in S. 12, the Education for the 21st Century
    Act. Under this bill, $5 billion is authorized over the next four years
    for nationwide school construction and renovation. This funding would
    help pay for up to half the interest that local school districts incur
    on school construction bonds, or for other forms of assistance that
    will spur new state and local infrastructure investment. The
    recommended 10 percent set-aside would allow the BIA to address its
    backlog of $475 million in school repair projects, including school
    replacements.
                                   conclusion
        Mr. Chairman, we urge the Congress to fulfill its fiduciary duty to
    American Indians and Alaska Native people and to uphold the trust
    responsibility as well as preserve the Government-to-Government
    relationship, which includes the fulfillment of health, education and
    welfare needs of all Indian Tribes in the United States. This
    responsibility should never be compromised or diminished because of any
    Congressional agenda or party platform. Tribes throughout the nation
    relinquished their lands as well as their rights to liberty and
    property in exchange for this trust responsibility. The President's
    fiscal year 1998 budget acknowledges the fiduciary duty owed to Tribes.
    We ask that the Congress consider the funding levels in the President's
    budget as the minimum funding levels required by Congress to maintain
    the federal trust responsibility and by Indian Country to continue on
    our journey toward self-sufficiency. This concludes my statement. Thank
    you for allowing me to present for the record, on behalf of our member
    Tribes, the National Congress of American Indians' comments regarding
    the President's fiscal year 1998 budget.
                                     ______

     Prepared Statement of Sara S. Ellison, Director, Community Relations,
                           Northeast Utilities System
        I am Sara S. Ellison, Director, Community Relations, Northeast
    Utilities, an electric company serving Connecticut, western
    Massachusetts and New Hamshire.
        Senator Specter and members of the Subcommittee, I am pleased to
    have the opportunity to submit testimony about the significant value of
    the Low Income Home Energy Assistance Program (LIHEAP), how we at
    Northeast Utilities partner with LIHEAP in the conduct of programs to
    benefit low-income and working poor households; and, LIHEAP's increased
    importance in the future.
        Northeast Utilities serves some 1.6 million customers in 407
    communities in Connecticut, western Massachusetts and New Hampshire. We
    estimate that about 15 percent of our residential customers are income
    eligible for LIHEAP energy assistance. Like everyone, these low-income
    customers need access to electricity; but they often have difficulty
    paying for needed energy services. We target a series of programs--
    partnered with LIHEAP--to help these families maintain access to
    electricity, use energy safely and wisely, conserve energy, budget and
    use available resources to help pay their bills.
        In brief, I'll document how the Low Income Home Energy Assistance
    Program supports healthy functioning and self sufficiency for families
    with children, the elderly, disabled and working poor: promotes the
    health of recipients directly by aiding the purchase of winter heating
    fuels and indirectly by enabling households with very low incomes to
    avoid the ``heat or eat'' problem; helps prevent illness,
    undernutrition, homelessness and even death; helps people cover basic
    home energy costs, make affordable payment arrangements and/or qualify
    for arrearage credit programs; helps companies work proactively and
    preventively with these customers; and helps people who need this
    assistance at the time of their need.
        Recent reductions in LIHEAP funding have hurt. It's estimated that
    more than a million fewer LIHEAP eligible households received
    assistance in fiscal year 1996 due to funding reductions from fiscal
    year 1995.
        Note that in the New England states we serve, a third to three
    quarters of LIHEAP participants use LIHEAP to purchase deliverable
    fuels. At all times, a payment or payment guarantee is needed.
        Cite some important strengths of the current LIHEAP: Governor's
    design their LIHEAP programs for their states' needs. While it's
    primarily a heating assistance program, states can and do use it for
    cooling assistance and some weatherization, and heating assistance can
    be defined to cover home energy more broadly. A clearly targeted block
    grant, it's carefully administered. The provision of LIHEAP advance
    funding helps states plan more effectively. In turn it helps agencies
    and consumers plan better.
        I'll describe our series of programs which partner with LIHEAP and
    leverage the benefits for these households. We know that they make life
    better for families and communities. And, that many other electric and
    gas companies have similar beneficial partnerships. Lastly, I'd like to
    tell you why we think that LIHEAP will be even more important in the
    future: LIHEAP's importance as a support to the working poor and
    families children who are going to work through welfare reform; the
    aging of our population--with more elderly living in the community; the
    heavy use of deliverable fuels in the Northeast; and deregulation in
    the gas and electric industries. Most importantly, the value of
    continuing a program which has effectively helped millions of families
    each year stay healthy, maintain access to essential home energy. In
    fiscal year 1995, it helped some 5.2 million stay warm in their own
    homes, in winter, and 400,000 stay cool in summer's heat. It has value
    in helping families maintain service year-round. I'll ask you to join
    us in supporting continuation of this effective, valuable program with
    full funding for fiscal year 1998, provision for emergency funding and
    advance funding for fiscal year 1999.
        In Connecticut, Massachusetts and New Hampshire, LIHEAP is
    primarily a heating assistance program. In fiscal year 1996, a quarter
    to almost a third (30 percent) of the income eligible population
    received LIHEAP funded energy assistance. Some 10 to 17 percent of the
    recipients used it to help pay electric bills. A majority of them were
    elderly customers.
        LIHEAP importantly helps with the full range of fuels. For example,
    it's used to purchase deliverable fuels--primarily oil and propane--by
    almost a third of Connecticut and Massachusetts recipients (Connecticut
    32 percent; Massachusetts 31 percent) and three-quarters (73 percent)
    of New Hampshire recipients. Deliverable fuels are not covered by a
    winter moratorium. Immediate payment or a payment guarantee is usually
    required.
        About half the LIHEAP recipients in Connecticut and Massachusetts,
    17 percent in New Hampshire, use it for natural gas (Connecticut 44
    percent; Massachusetts 52 percent). In Connecticut, the gas companies
    match, dollar for dollar, the LIHEAP funds that they receive as part of
    their arrearage credit program. This is a great benefit to these
    customers.
        I have administered Northeast Utilities' programs for low-income
    and special needs customers in Connecticut and Massachusetts for more
    than 15 years. Northeast Utilities takes very seriously our public
    service obligation to all our customers. As a matter of corporate
    policy we work to improve the social and economic conditions in the
    communities we serve. I have seen that the availability of LIHEAP
    funds: promotes the health of recipients directly by aiding the
    purchase of winter heating fuels and indirectly by enabling households
    with very low incomes to avoid the ``heat or eat'' problem; helps
    prevent illness, undernutrition, homelessness and even death; helps
    people cover basic home energy costs, make affordable payment
    arrangements and/or qualify for arrearage credit programs; helps the
    Company identify and work proactively and preventively with these
    customers; and assists people at the time of their need.
        LIHEAP is a clearly targeted block grant which helps people with a
    basic necessity. It is carefully and accurately administered in our
    states.
        The provision of advance funding importantly helps the states do
    necessary program planning; it helps agencies and consumers plan
    better.
        To document the vital preventive impact of LIHEAP, regarding the
    healthy development of children under the age of three; and, the
    problem of undernutrition and what is termed the ``heat or eat''
    phenomenon, I have attached to my testimony, and cite below, reports of
    two epidemiological studies of children under the age of three who were
    seen at Boston City Hospital's Pediatric Emergency Department:
        ``Seasonal Variation in Weight-for-Age in a Pediatric Emergency
    Room,'' Dr. Deborah A. Frank, lead investigator, Public Health Reports:
    Volume III, July/August 1996 found that: ``* * * the percentage of
    children visiting the emergency room with weight-for-age below the
    fifth percentile was significantly higher for the three months
    following the coldest months than for the remaining months of the year;
    * * * gastrointestinal illness was correlated with both season of
    measurement and weight-for-age, but the seasonal effect remained for
    the entire sample after controlling for dehydration. * * * The
    questionnaire data suggested a relationship between economic stress and
    food insecurity that might help explain the seasonal effect. Families
    who were without heat or who were threatened with utility turnoff in
    the previous winter were twice as likely as other families to report
    that their children were hungry or at risk for hunger.''
        ``Housing Subsidies and Pediatric Undernutrition,'' Alan Meyers,
    MD, PHD the lead investigator, Archives of Pediatrics and Adolescent
    Medicine: Volume 149, October 1995. Copyright 1995, American Medical
    Association. found that: ``* * * The risk of a child's having low
    growth parameters was 21.6 percent for children whose families were on
    the waiting list for housing assistance compared to 3.3 percent for
    those whose families received subsidies * * * Receiving a housing
    subsidy is associated with improved growth in low-income children, an
    effect which is consistent with housing subsidies' having a protective
    effect against childhood undernutrition.''
        LIHEAP is not a housing subsidy, but LIHEAP helps pay for an
    essential component of shelter. Protecting the healthy development of
    young children reduces later remedial costs such as special education.
    As you know, most rental property requires tenants to pay for their
    home energy costs. Also various studies have shown that children who
    (because of housing moves) move from school to school have difficulty
    succeeding in school.
        In regard to LIHEAP's value to the elderly and working poor, a
    statement from the Connecticut Association for Community Action which
    represents the fourteen community action agencies in Connecticut who
    administer the LIHEAP funded energy assistance program says, with
    regard to the working poor and households with elderly and disabled
    members, who accounted for almost 60 percent of recipients during their
    1995/1996 program year:
        ``We have seen, for the working poor, that this critical help
    allows them to manage winter heat in addition to necessities like
    winter clothing for children, day care or medical expenses as well as
    cover emergency car repairs * * *''
        ``The struggle to survive is evident in our elderly population,
    those who should never be without heat. Our clients state that they can
    not survive on Social Security alone--They have to make the
    unacceptable choices between food and fuel--A choice no one should have
    to make!''
        Let me briefly describe some of the effective partnership programs
    that we operate in conjunction with LIHEAP funded energy assistance:
         Winter service protection. Both Connecticut and Massachusetts have
    laws requiring a moratorium on shutoffs of electric and gas service for
    ``hardship'' customers during the winter months (November 1-April 15 in
    Connecticut; November 15-March 15 in Massachusetts). The income
    guideline for ``hardship'' is the same as for LIHEAP funded assistance.
    When a household is accepted for energy/fuel assistance--for any fuel--
    the Company is notified and we code the customer household for ``winter
    service protection.'' It's our most effective means of identifying such
    households.
        ``Hardship'' coded customers get our Help-Line newsletter with
    information on conservation, company programs including payment
    arrangements, assistance resources, employment, health and safety. A
    D.E.C. Research survey (Summer 1995) documents that these customers act
    on our information.
        We use our ``hardship customer'' lists to recruit participants for
    our WRAP weatherization program in Connecticut. It's a fuel blind
    weatherization program which provided weatherization services to some
    4,100 housing units during 1996.
      --In WRAP we partner our conservation dollars with those of the gas
            companies in our service territory and with federal
            Weatherization Assistance Program dollars to jointly provide a
            cost effective program.
      --The community action agency staff provide or arrange the services
            and provide conservation education to participants as well.
      --Many participants are LIHEAP clients--The Weatherization Assistance
            Program funds are targeted to serving LIHEAP's ``vulnerable''
            households (households with a child under the age of six or a
            member who is elderly or disabled). We use utility conservation
            dollars to help weatherize those homes; but we also use utility
            funds to weatherize units occupied by the ``non-vulnerable.''
        Low-income customers who are seriously delinquent (owe more than
    $100 which is 60 days delinquent) and who have used energy assistance
    to help pay their electric bill are eligible to participate in our NU
    START payment incentive program. NU START gives them a credit on their
    arrears, each month, when they pay their monthly bill. Over a three
    year period, most customers can eliminate their back bill for
    electricity.
        We ask NU START applicants to participate in our ``Choices''
    workshops on conservation and budget management before joining the
    program. The budget counseling program is seen as being so effective
    that the State of Connecticut has made participation in ``Choices: Your
    Money'' mandatory for all applicants for the State's Unemployment
    Compensation program.
        The ``Choices'' workshops are offered to other ``hardship''
    customers as well, as part of our proactive, preventive approach.
        Other partnership efforts include annual fall meetings with
    representatives of more than 500 agencies to advise them about energy
    assistance and discuss our separate and joint efforts to work with or
    help low-income and special needs customers; publications in Spanish,
    and mailings of the Earned Income Tax Credit form to all hardship coded
    customers with a letter encouraging participation by eligible
    households.
        Despite the fact that, in Connecticut, we must offer unlimited
    electric service to all low income ``hardship'' eligible customers for
    5\1/2\ months a year regardless of any payment (from November 1 to
    April 15) and must reconnect any disconnected customer each November,
    most of the electric bills of identified ``hardship'' customers are
    paid, these households try hard to cover their bills, but the situation
    is deteriorating.
      --In fiscal year 1996, in Connecticut 36,900 hardship coded customers
            paid 89 percent of their bills (billings were $31.8 million;
            some 8,100 received $2.4 million in energy assistance). In
            addition, there were $4.1 million in write-offs for 6,800
            customers, and we carry millions in delinquent bills year-
            round.
      --The equivalent figures for Massachusetts are 20,400 customers paid
            90 percent of their bills (billings were $11.7 million (A $3.6
            million, 30 percent rate discount is provided; $600,000 in
            LIHEAP funds was received.) There was $1.3 million in write-
            offs for 3,000 customers and millions in delingencies are
            carried year-round.
        We are very concerned about recent reductions in LIHEAP and the
    impossibility of the households' or the private sector's picking up the
    slack. The drop in LIHEAP funds for fiscal year 1996 versus fiscal year
    1995 is reflected, not only in the drop in percentage of bill payment
    from 94 percent to 89 percent for Connecticut and 93 percent to 90
    percent for Massachusetts, but most seriously in the health affects
    cited by health and social services agencies as families try to fill
    the gap. In other states the programs have been closed early due to
    lack of funds, denying people any needed assistance. I am told that
    other companies are seeing more serious problems with their customers.
        Let me turn briefly to the future and explain why we think that
    LIHEAP will be even more important.
        The heavy use of deliverable fuels in the Northeast, combined with
    our cold weather and the aging of our population makes access to
    assistance with winter heat a necessity that's going to be needed by
    more people.
        Nationwide, deregulation of the gas industry means that they
    operate in a more competitive marketplace. Residential rates have not
    gone down. The new gas turbine electro-technologies will mean, in the
    near future, an expansion in market pressures for gas--it is unlikely
    that increased demand for gas will lead to a reduction in price. Thus,
    the millions of low income households who depend on gas for heat can be
    expected to face higher prices. Partnerships, as I have described for
    Connecticut, related to LIHEAP will become more important.
        We are in the midst of electricity restructuring. We know that the
    same market pressures will exist. LIHEAP funds will be needed to help
    some of these households pay for electricity or the cost for ``default
    service'' will rise and hurt all ``default service'' users. What are we
    seeing locally?
      --In Connecticut, the draft restructuring bill provides for low
            income conservation and ``hardship'' protection (the winter
            moratorium on service shutoffs applies to electric suppliers as
            well as the distribution company). There is supposed to be a 10
            percent rate cut from July 1999 until 2002. But once the
            competitive market supplies the electricity, the price will
            respond to the cost to serve.
      --In Massachusetts, continuation of current ``hardship'' protections,
            the 30 percent rate discount and low income conservation
            programs are included in the restructuring proposals.
      --In New Hampshire there is a commitment to maintaining affordable
            access to electricity. A new percent-of-income program is
            proposed. It will certainly help these households. However,
            given that 73 percent of New Hampshire's LIHEAP recipientts use
            LIHEAP for deliverable fuels during the winter, it's not the
            answer.
        Nationwide, welfare reform means that more families with young
    children will be working. As Joanne Balaschak from the Connecticut
    Association for Community Action puts it: ``With the impending changes
    to the welfare system, the Energy Assistance Program becomes even more
    significant. Along with welfare reform, the Energy Assistance Program
    will provide this new working group a much needed boost to self
    sufficiency.''
        The aging of our population means that there will be more
    households with limited incomes living in the community. Currently
    about one third of LIHEAP participant households have a elderly member.
    Maintaining their health and helping them remain outside of
    institutions is cost saving and humane.
        The NCLC study of the ``Energy Affordability Crisis of Older
    Americans'' p. 5 says ``Approximately 50 percent of all cases recorded
    by the Federal Centers for Disease Control and Prevention as
    hypothermia-related deaths were of persons over 64 years of age.''
        The LIHEAP program annually helps millions (more than 5.2 million
    households in fiscal year 1995) stay warm in the winter, in their own
    homes. It helps thousands of families (almost 400,000 in fiscal year
    1995) stay cool in the heat of summer and prevents life threatening
    heat stress. It promotes health. The funds often help families make
    arrangements with utility companies so that they avoid shutoffs. LIHEAP
    may only account for a small share of total energy spending, but it is
    critically needed assistance. It is often the linchpin that makes the
    difference. Electric and gas companies and community agencies operate
    many constructive partnership programs built in conjunction with
    LIHEAP. Millions of families benefit as do the communities in which
    they live. Please join us in supporting an effective, vitally needed,
    fully funded LIHEAP program. Please support funding for fiscal year
    1998 of at least the 1995 fiscal year level, $1.319 billion, provide
    for emergency funding and for advance funding for fiscal year 1999 at
    at least that level.
        Thank you again for the opportunity to testify.
                                     ______

          Prepared Statement of the American Public Power Association
        The American Public Power Association (APPA) is the service
    organization representing the interests of the more than 2,000
    municipal and other state and locally owned utilities throughout the
    United States. Collectively, public power utilities deliver electric
    energy to one of every seven U.S. electric consumers (about 35 million
    people) serving some of the nation's largest cities. The majority of
    APPA's member systems are located in small and medium-sized communities
    in every state except Hawaii. APPA member systems appreciate the
    opportunity to submit this statement in support of fiscal year 1998
    appropriations for the Low Income Home Energy Assistance Program
    (LIHEAP).
        We fully support the Administration's fiscal year 1998 budget
    request of $1 billion for LIHEAP. APPA also supports the request for
    $300 million in emergency funds in fiscal year 1998 and $1 billion in
    advanced funding for fiscal year 1999. Because the majority of LIHEAP
    monies is needed during a short period of time in the winter months,
    advanced funding for LIHEAP is critical in enabling states to
    effectively plan for and administer the program.
        Funding cuts since LIHEAP's last reauthorization have forced a
    tightening of eligibility standards and, in some cases, significant
    reductions in benefit levels. According to the National Energy
    Assistance Directors' Association (NEADA), the primary educational and
    policy organization for state LIHEAP directors, the number of
    recipients has been cut by over one million households during the
    recent past and average benefits have declined by about 10 percent.
    Prior to the dramatic reduction in LIHEAP funding in fiscal year 1995,
    the program was serving 20 percent of the eligible population, with
    one-half of the recipients elderly or disabled Americans living on
    fixed incomes. Without the assistance provided by LIHEAP, many would be
    forced to choose between paying their home energy bill or purchasing
    other necessities of life, such as food.
        As the debate over restructuring of the electric utility industry
    and the issue of providing and funding ``public benefits'' programs
    continues, some in Congress have stated their belief that electric
    utilities should assume the entire burden of energy assistance for low
    income customers as a cost of doing business. As these restructuring
    efforts take place at both the federal and state levels, the risks
    become greater that bills for residential customers, especially those
    with low incomes, will increase if retail markets are opened to
    competition. An ever larger number of households may be unable to
    obtain any electricity at all. The need for full funding of LIHEAP
    remains critical in ensuring that all those in need of energy
    assistance receive help. APPA believes that any public benefits
    programs should not replace or supersede existing programs, such as
    LIHEAP, that are funded by federal appropriations.
        As evidence of commitment to low income assistance, public power
    systems across the country support a variety of programs providing help
    to low and fixed income customers. A recent survey conducted by the
    National Fuel Funds Network (NFFN) shows that publicly-owned utilities
    raised 14 to 26 cents more per customer than other utilities in their
    efforts to assist low income and needy customers in paying their bills.
    Many public power systems provide special rates for low income
    households and some have residential conservation and demand side
    management programs designed to reduce energy consumption.
        In addition, the impact of welfare reform on energy assistance is
    just beginning to be felt and LIHEAP is likely to play an important
    role in the transition. Persons who will be leaving the public
    assistance rolls likely will be entering lower paying jobs and still
    will be confronted with large energy bills. These families remain at
    risk.
        LIHEAP is one of the outstanding examples of a successful state-
    operated program. The requirements imposed by the federal government
    are minimal and most important decisions are left to grantees.
        APPA urges this Subcommittee's favorable consideration of the
    Administration's fiscal year 1998 budget request for LIHEAP. Again,
    thank you for this opportunity to present our views.
                                     ______

      Prepared Statement of Kathleen Walgren, Chairperson, National Fuel
                                 Funds Network
        I want to thank Chairman Specter and the members of the
    subcommittee for the opportunity to submit this testimony. The National
    Fuel Funds Network (NFFN), which I represent as Chairperson, supports
    adequate funding for the Low Income Home Energy Assistance Program
    (LIHEAP) at no less than $1.3 billion for fiscal year 1998.
        The NFFN is a membership organization comprised of over 200 dues
    paying representatives of private fuel and energy assistance funds,
    community action agencies, social service organizations, utility
    companies, trade associations and private citizens. Our member
    organizations are located in 44 states and the District of Columbia.
    The NFFN is concerned with the ongoing energy crisis being experienced
    by the poor of America.
        Since our first steering committee meeting in 1984, the NFFN and
    its member organizations have put into action a commitment to help the
    poor of America meet their basic energy needs.
        Our member fuel funds are organizations that raise private
    contributions in their local communities to help low-income households
    pay their home energy bills. Fuel funds range from small church groups
    which distribute hundreds of dollars in a single neighborhood to large
    independent organizations which distribute millions of dollars across a
    state. Fuel funds may be a division of a large, social service agency
    or they may be operated by a local utility or energy company.
        Whatever their form, they all raise and distribute private sector
    monies and they all, inevitably, discover that the resources they
    manage and the resources provided by LIHEAP, are inadequate. As a
    consequence, fuel funds become involved in attempting to increase the
    resources available to help the poor meet their energy needs.
        NFFN has identified nearly 300 fuel and energy assistance funds
    which have developed since the late 1970's to raise private energy
    assistance dollars at the local level to provide a safety net for
    households who have exhausted all avenues of public energy assistance.
    The families served by fuel funds rank among the ``poorest of the
    poor'' in America; the majority have annual household incomes of less
    than $10,000. Nationally, fuel funds make heating and cooling bill
    assistance payments of over $72 million dollars each year on behalf of
    over 500,000 families. These payments, while vitally needed, are quite
    small in comparison to the $1 billion in fiscal year 1997 LIHEAP
    funding.
        As a result of the decline in LIHEAP funding over the years, other
    sources of payment assistance, such as private fuel and energy
    assistance funds, have taken on increased importance. When state
    programs are forced to close prior to winter's end because of
    inadequate federal funding, many needy families must look to other
    sources of energy assistance. Fuel funds are unable to fill the gap
    between the need for assistance and available federal funds. Many fuel
    funds themselves are under greater pressure and struggling to maintain
    current funding and levels of service.
        In my home state of Michigan, most LIHEAP funds are allocated to
    Home Heating Credits, which are applied to the heating bills of low-
    income households. In 1995, the average grant was $188. Last year it
    was $114--a forty percent decrease because of the reduction in LIHEAP
    funds. Private fuel funds, such as The Heat and Warmth (THAW) Fund
    which I administer, were sought out for assistance earlier than in
    previous years and were the only resources available. THAW is an
    independent non-profit organization that raises and distributes $1.5
    million annually for energy assistance in Southeastern Michigan. THAW's
    funds were exhausted in the City of Detroit a month earlier than in the
    past. Our community agencies reported that they turned away 390
    applicants a day in March. Many other privately funded energy
    assistance programs found their funds exhausted before the winter
    moratorium on utility shut-offs expired leaving many vulnerable
    families unable to find heating assistance throughout a very cold
    spring.
        As the director of a fuel fund, I am often asked to describe the
    typical recipient. The only common denominator I can define is that
    they are poor. In my program, THAW, three quarters are well below the
    federal poverty guidelines. They often pay as much as 25-30 percent of
    their already inadequate income to heat and light their homes. Ladies
    and gentlemen, think of your own income and ``remove'' one quarter of
    it. That certainly narrows your choices for discretionary spending. For
    low income families, too often less discretionary money means less food
    or less medicine. Their dilemma is which necessities to do without.
        This fall I received a call from an eighty year old woman who lived
    in a small town. She asked if there was a possibility THAW could help
    her. She said she keeps her heat so low during the day that she wears a
    coat in the house. She turns the heat off at night. She described
    turning only one light on and said she goes to bed when it gets dark. I
    asked the local community agency to check on her. They found she had
    been hospitalized with pneumonia. The elderly are especially vulnerable
    to hypothermia and require adequate nutrition to maintain their health
    during the cold months. Is this woman ``typical?'' For our elderly
    recipients, I'm afraid she is.
        Often applicants are unemployed. The loss of a job, especially a
    low wage job, throws a family already struggling to make ends meet into
    immediate crisis. There is no savings with which to pay utility bills.
        Often our applicants are single parents, many of whom are working
    at low wage jobs. Helping them means that the children will stay in
    warm homes.
        Other recipients are disabled and struggling to pay monthly
    expenses. A winter such as we have just experienced, where gas and fuel
    prices increased 30 percent, finds them unable to keep up with utility
    bills and seeking fuel fund help.
        It is important to remember that when we talk about ``the poor'' we
    are making huge generalizations. Families and individuals move in and
    out of that category due to the circumstances of their lives. A death
    in the family, divorce, a plant closing, loss of a job, extended
    illness or any number of situations can create a crisis. These are the
    people that fuel funds, emergency assistance programs, seek to help.
        Reductions in LIHEAP are bringing more and more families to the
    doors of fuel funds around the country. As skilled as we are in raising
    charitable contributions from private donors, we are inadequate to
    compensate for the loss of federal support. Most fuel funds do not
    distribute LIHEAP. Most are last resort programs which require that
    applicants have sought all other resources including LIHEAP, before
    receiving help. When that assistance is inadequate or insufficient,
    they turn to private resources. Detroit's United Way information and
    referral service reports that seventy-five percent of calls during the
    winter are from people seeking energy assistance, some 1,800 per month.
    Local churches report the similar percentages.
        The impact of welfare reform on energy assistance is just beginning
    to be felt. People who are leaving public assistance will enter low
    paying jobs and will still be confronted with large energy bills. These
    families are at risk. Furthermore, roughly half of the LIHEAP funded
    Home Heating Credits in Michigan go to the elderly and disabled
    populations that are not expected to move into the workforce. LIHEAP
    will play an increasing role in the welfare reform transition.
        Some may suggest that private fuel funds and other charitable
    contributions will make up the deficit resulting from further cuts in
    LIHEAP funding. Others will point to fuel funds as an example of the
    kinds of help that could potentially take the place of LIHEAP. Fuel
    funds raise only about 5 percent of what is available through LIHEAP.
    When LIHEAP suffers a 25 percent cut, as it did last year, fuel funds
    cannot close the gap. As thankful as we are for the continued generous
    response from private donors across the country, we are painfully aware
    that our efforts still fall far short of the need. Privately raised
    energy assistance dollars can only supplement LIHEAP dollars to a small
    degree, and can never take the place of federal energy assistance
    funds.
        Without LIHEAP funding during periods of prolonged and extreme
    winter weather, approximately 2.8 million families with children would
    be left virtually ``out in the cold.'' In 1994, of the 5.6 million
    households who received assistance from LIHEAP, fifty percent included
    a child under the age of eighteen. One in five have a disabled person.
    About 33 percent of households have elderly residents. For those states
    with extremely hot weather, the number of elderly households is more
    than 40 percent. Further cuts to an already underfunded program would
    have a devastating effect on our most vulnerable citizens.
        The receipt of assistance to pay utility bills can mean the
    difference between a child remaining safe and warm in their home, or
    suffering deadly consequences. When some of the families who had
    experienced a periodic loss of their heating utility were asked what
    they did for heat when they had a heat interruption, 54 percent of the
    households said they were not able to heat their homes. Thirty-nine
    percent reported that they heated one or two rooms with another heat
    source such as a fireplace or cooking stove to keep warm--clearly a
    fire hazard.
        There have been a number of tragic events from using dangerous
    alternatives. House fires disproportionately take the lives of children
    and the elderly. Recognizing the relationship between loss of utility
    service and the risk of injury and death from fires, the NFFN has
    formed a relationship with fire marshal's in Philadelphia, Washington,
    D.C., Detroit and other communities, to educate families about the risk
    of fire and to put in place prevention measures.
        More often than not, the receipt of assistance to pay utility bills
    can also make a difference in the quality of life for low-income
    children. In recent years, increasing national attention has been
    focused on education, yet low-income children are still less likely to
    receive a good education. A study entitled ``A Road Often Taken:
    Unaffordable Home Energy Bills, Forced Mobility and Childhood Education
    in Missouri'' explored the interconnection between two seemingly
    unrelated problems in rural Missouri households: unaffordable home
    energy bills and poor educational attainment. Findings conclude that a
    substantial portion of the low-income population is ``frequently
    mobile'' over a five year period; that one primary cause of this
    frequent mobility is the unaffordability of home energy bills,
    including home heating and electricity; and that the frequent mobility
    creates problems for both the students in these mobile households and
    for the teachers and schools who seek to educate those transient
    students.
        Another study done in Philadelphia reports that a utility shut-off
    notice is the clearest indicator of potential homelessness. When
    families are unable to maintain essential services they may be forced
    to move. The result is abandoned properties, and the economic decline
    of neighborhoods. Intervention, in the form of energy assistance, helps
    stabilize those families.
        While we who daily serve the energy needs of low-income families
    understand the difficult task of setting national priorities that is
    before Congress, we respectfully, but urgently request you, as you
    consider funding for fiscal year 1998, to keep in mind the important
    role that LIHEAP plays as a safety net for millions of our nation's
    most vulnerable citizens. It is a broad based, effective and efficient
    program. The need is very real. Your deliberations today can
    potentially assist those who daily struggle to protect themselves and
    their families from extremes of weather.
        Thank you for your careful consideration of this testimony.
                                     ______

          Prepared Statement of the Pennsylvania Electric Association
        The Low Income Energy Assistance Program (LIHEAP) is an important
    safety-net for Pennsylvania's poor and elderly residents. The LIHEAP
    helps pay the energy bills of hundreds of thousands of low income
    families throughout the Commonwealth. Pennsylvania's investor owned
    electric utilities urge the Senate Appropriations Subcommittee on
    Labor, Health and Human Services and Education to maintain a funding
    level of at least $1.0 billion for fiscal year 1998.
        Federal funding for the LIHEAP has decreased dramatically over the
    years: from $2.1 billion in fiscal year 1986 to $1.0 billion in fiscal
    year 1997. Similarly, the LIHEAP allocation for Pennsylvania over this
    time period has fallen from $141 million to $67--a drop of 52.5
    percent. The LIHEAP benefits for electric utility customers in
    Pennsylvania fell from $19.6 million in fiscal year 1995 to $9.5
    million in fiscal year 1997.
        The U. S. Department of Health and Human Services (HHS) may
    allocate supplementary LIHEAP funds to states that have acquired non-
    federal leveraged resources for low-income households. The leveraged
    resources request submitted by Pennsylvania to HHS was one of the
    highest in the nation, and the Commonwealth has received significant
    leveraging awards from the Department. Last year Pennsylvania's
    regulated electric and gas utilities accounted for $52.7 million in
    leveraging funds. This total also includes $5 million that the state's
    electric and gas utilities helped to raise for private fuel funds.
        Some federal and state policy-makers mistakenly believe that the
    energy crisis is over for poor Americans; however, experience in the
    Commonwealth shows otherwise. In Pennsylvania, the percentage of income
    needed to cover typical annual energy bills exceeds 20 percent for the
    average low-income families and 5 percent for higher income families.
    The average LIHEAP cash grant in 1986-87 covered 27 percent of the
    average annual electric heating bill. In 1995-96 the average LIHEAP
    cash grant covered only 15 percent of the average annual electric
    heating bill, even though prices for electricity have remained fairly
    constant.
        The Pennsylvania Department of Public Welfare (DPW) estimates that
    only one-third of LIHEAP eligible households receive energy assistance
    because of limited funding. In 1991-92, for example, the LIHEAP served
    520,600 low income households in Pennsylvania; that number is expected
    to drop to 280,000 in 1996-97. Less funding for the LIHEAP has forced
    DPW to tighten income guidelines, to restrict eligibility, and to
    shorten the program year. As a result, thousands of working poor
    families have been excluded from receiving LIHEAP benefits.
        The LIHEAP is a critical program that helps sustain a basic need
    for low income families. Its recipients are the elderly, the working
    poor, and the disabled. One-third of LIHEAP recipients are over 60
    years of age and 13 percent are disabled. Nearly 7 out of 10 recipients
    have annual household incomes under $8,000. Many low income
    Pennsylvanians face difficult situations, and further reductions in the
    LIHEAP could turn hardship into tragedy.
        The LIHEAP is an effective block grant program. In Pennsylvania,
    for instance, LIHEAP grants are not distributed merely on the basis of
    income; rather, they are targeted according to household income, family
    size, energy costs, and weather regions. The program has the type of
    built-in flexibility that many states are looking for in federal-state
    partnerships.
        We urge your continued support of this most important program.
                                     ______

           Prepared Statement of United Distribution Companies (UDC)
        Mr. Chairman and members of the Subcommittee: United Distribution
    Companies (UDC) is a group of natural gas companies serving customers
    chiefly in the Midwest and Northeast. UDC member companies are deeply
    committed to meeting the energy needs of all our customers, in
    particular, those of low and fixed-income. Our companies are a vital
    part of the communities we serve.
        Mr. Chairman, once again, this past winter certain regions of the
    country experienced record cold weather coupled with record levels of
    snowfall. In particular, some Midwestern areas suffered through brutal
    weather well below zero for extended periods of time that forced
    certain states to virtually shut-down. To compound the severity of the
    problem, as the weather began to turn bitter, prices for fuel oil,
    propane gas, and in some states natural gas rose dramatically in the
    autumn and early winter over previous levels. On March 4, 1997, The
    Wall Street Journal reported that oil prices reached an 11-year high
    during the second half of 1996 (excluding the 1990 price fly-up during
    the Gulf War) and propane prices doubled and tripled in some areas of
    the country.
        These conditions challenged and stressed the ``average'' American
    household, but to millions of low-income elderly, disabled and working
    poor families this confluence of factors became overwhelming. The
    choices many were forced to make were untenable; however, we should add
    that the situation that many low-income families face in trying to meet
    their home energy needs is difficult even under ``normal''
    circumstances.
        While most of us can take the comfort of a warm home in the winter
    or a cool home in the summer for granted, try to imagine what it would
    be like if you did not have the means to secure these basic
    necessities. For millions of seniors, disabled, working-poor families,
    and others across this country, LIHEAP is more than economic
    assistance, it is a lifeline for health and safety. This winter,
    northern-tier states faced multiple days of sub-zero weather. No one
    can go without heat in those conditions.
        Mr. Chairman, in the coming weeks you and your colleagues will work
    to craft necessary budget and spending measures for fiscal year 1998
    that will set the fiscal spending priorities for the next year, as well
    as to chart the course for the government to meet ``balance'' in five
    years. As you chart the course to continue to protect our nation's
    fundamental health, education and social services priorities, we ask
    you to provide critical funding for home energy assistance for low-
    income Americans.
                         liheap funding recommendation
        Mr. Chairman, on behalf of all of our residential customers--
    especially the low-income customers who live in our communities--we
    urge you to restore critical funding for LIHEAP. We ask for your
    continued support for the Low Income Home Energy Assistance Program,
    and urge that this Subcommittee and the Congress adopt the following in
    the fiscal year 1998 Labor, HHS and Education Appropriations Bill:
    Provide an appropriation of at least $1.319 billion for the fiscal year
    1998 LIHEAP; provide an ``advance appropriation'' of at least $1.319
    billion for the fiscal year 1999 LIHEAP; and ensure that any leveraging
    monies will not ``supplant'' regular LIHEAP appropriations for meeting
    low-income households' basic energy needs.
        In addition, UDC also endorses the continuation of the ``Emergency
    Contingency Fund,'' consistent with LIHEAP's authorization statute,
    which authorized $600 million. In our view, the emergency funds should
    not be used in lieu of regularly appropriated funds for LIHEAP.
        UDC is urging a restoration of LIHEAP funding to at least the
    $1.319 billion level of funding after a careful review of the facts. In
    recent years, LIHEAP funding has been slashed; between fiscal year 1995
    and fiscal year 1996 alone cuts totalled 30 percent. Last year, the
    National Energy Assistance Directors' Association (NEADA) reported that
    1.4 million needy households--many of them elderly or disabled--lost
    necessary aid. Fourteen states, including Louisiana, Pennsylvania and
    Florida reported in excess of a 30 percent drop in elderly served due
    to insufficient funds.
        Other families losing benefits included many working poor
    households that face a day-to-day struggle attempting to remain self-
    sufficient and stay off welfare. We believe that the $1.319 billion in
    regular appropriations--the fiscal year 1995 LIHEAP funding level--is
    the bare minimum amount necessary to enable restoration of critical
    assistance to these vulnerable households.
        Mr. Chairman, we applaud you for recognizing the pivotal role that
    advance appropriations plays in the implementation of LIHEAP by the
    states, and we urge you and your colleagues to continue to give the
    states the necessary tools to plan the next year's program prior to the
    next heating season. Last year's piecemeal funding had a disruptive
    effect on the states' abilities to plan and implement their LIHEAP
    Programs. An advance appropriation of $1.319 billion for fiscal year
    1999 is central to the effective administration of the program.
        UDC shares the views of the representatives of the states and local
    agencies that testified earlier this month on LIHEAP before the House
    Committee on Education and the Workforce's Subcommittee on Early
    Childhood, Youth and Families. They stated that the Leveraging
    Incentive Program should not be expanded at the expense of the core
    LIHEAP program. Unfortunately, LIHEAP has not been funded at the levels
    the Congress intended when the Leveraging Program was designed. The
    legislative history makes clear that the Congress intended that these
    leveraging grants be supplemental to the full authorized amount of
    LIHEAP.
        Congress ought not to penalize low-income seniors and families
    living in states without mandated programs for low-income households,
    or casino revenues for lifeline programs dedicated to vulnerable
    citizens. There is no ``level playing field'' in the states when it
    comes to leveraging. Also, recent changes in the federal rules on
    leveraging marginalize the benefit of states' leveraging efforts. The
    paperwork burden on leveraging is disproportionate to the size of the
    program. It is interesting to note that there appears to be more of
    pages in the Federal Register on the leveraging program than on the
    entire LIHEAP block grant program. We question the value of continuing
    the effort at LIHEAP's current funding. Such constraints also make the
    Residential Energy Assistance Challenge (R.E.A.Ch.) Program
    unrealistic.
                            broad support for liheap
        During the 104th Congress, you, Senator Harkin and many of your
    colleagues worked hard to restore critical funding for LIHEAP. More
    recently, Mr. Chairman, in addition to your letter, we know that you
    are aware of the numerous congressional letters urging the rejection of
    any cuts to LIHEAP in the fiscal year 1998 Budget, and asking for the
    full release of emergency contingency funds for fiscal year 1997. These
    efforts have enjoyed broad bi-partisan support.
        In addition, the National Governors' Association (NGA) supports
    maintaining adequate federal funding for LIHEAP. The NGA has endorsed
    LIHEAP as a targeted block grant that provides the states with the
    necessary flexibility to best assist the elderly, disabled, and
    working-poor households in meeting their home energy needs. The
    Governors have also urged the Congress to continue to provide advance
    appropriations for LIHEAP to avoid unnecessary disruption in the
    program.
        Another long-standing supporter of LIHEAP, the National Association
    of Regulatory Utility Commissioners (NARUC)--representing the state
    regulatory bodies responsible for regulating the rates and services of
    electric and gas utilities throughout the United States--has also
    adopted a resolution rejecting any further cuts or rescissions to
    LIHEAP. NARUC has urged the Congress to provide at least $1.3 billion
    for fiscal year 1998 and to continue to provide advance appropriations.
    LIHEAP is the foundation for many low-income programs authorized/
    mandated by the state public utility commissions.
                the need: liheap helps seniors and the disabled
        Let us examine the households that actually receive LIHEAP. Of the
    6.0 million households which received LIHEAP assistance in fiscal year
    1994, approximately 70 percent of these families had annual incomes of
    less than $8,000. In fact, 78 percent of LIHEAP-recipient households in
    Illinois earned less than $8,000. Yet despite this low income, the
    majority of recipient households are not receiving public assistance.
    In Illinois, 70 percent of LIHEAP-recipient households are not on
    welfare.
        On average, one-third of LIHEAP households are elderly. States,
    such as Michigan, Maine, Nevada, Georgia, Tennessee, South Carolina,
    and Arkansas find more than 40 percent of their LIHEAP recipient
    households include an elderly person. According to the latest available
    data, nearly 60 percent of the assisted households in Mississippi
    included an elderly person. Due to federal cuts this year, many of
    these households may have lost assistance. For example, in Illinois, 17
    percent of seniors that received LIHEAP in fiscal year 1995 lost all
    benefits in fiscal year 1996 due to cuts. Finally, nationwide, over 20
    percent of the households served include a disabled member. LIHEAP-
    recipient households in 11 states, such as, Georgia, South Carolina,
    North Carolina, Tennessee, Arkansas, Kentucky, and California have in
    excess of 30 percent with a disabled member; while in Illinois, 39
    percent of the households include a disabled person.
     assistance critical to poor making transition out of welfare/working
                                      poor
        One of the primary goals of the 104th Congress was to secure a
    comprehensive reform of our nation's welfare system. A key underlying
    principle of the legislation is to assist low-income families and
    individuals become/remain self-sufficient. LIHEAP is such a program;
    LIHEAP is the antithesis of welfare. LIHEAP is designed to address the
    needs of low-income families in meeting their annual energy expenses.
    LIHEAP promotes self-sufficiency; it protects these families on the
    edge of poverty from falling deeper into debt, and allows them to have
    more control over their lives and their resources. LIHEAP will become
    all the more important as more welfare recipients make the transition
    to employment.
        Working-poor households account for approximately one-third of the
    LIHEAP-recipient population. Changing dynamics in the work place,
    including inadequate and stagnating wages, part-time employment, and
    fewer benefits are swelling the ranks of the working poor. Some of
    these households have learned that a job does not necessarily get you
    out of poverty. To illustrate, on December 19, 1996, Catholic Charities
    USA released the results of its 1995 survey--the most comprehensive
    report available of private social services and activities. It reported
    that increasingly, working people have been coming to them in crisis.
    This organization provided emergency food and shelter to almost 7.2
    million people in 1995. Over half of those assisted were not on
    welfare. The families and individuals in this survey needed help with
    grocery or utility bills to make it to the next paycheck. For many, the
    choices continue to be between heat and food, rent, medicine for a
    child, or bus fare to work.
        Low-income families struggle to stay together. With resources
    stretched thin, a meaningful LIHEAP benefit helps families face daily
    challenges to pay for basic necessities. If you take away or reduce
    their energy assistance, that is one more push toward dependence. These
    families are worth the investment of a LIHEAP benefit to keep them
    independent. LIHEAP fosters independence rather than dependence. It
    helps low-income people stay off welfare.
                           health and safety concerns
        In attempting to argue that LIHEAP is no longer needed, program
    critics have misrepresented ``shut-off'' moratoria as a ``safety-net''
    in protecting low-income families. In those states in which moratoria
    exist, the moratoria may provide some protection for low-income
    consumers, but no long-term protection. Moreover, moratoria do not
    exist in all states (including cold weather states). In fact, the NARUC
    survey on ``uncollectibles'' catalogues the states policies on ``shut-
    offs,'' and illustrates that the states' policies vary greatly. In
    addition, moratoria do not govern unregulated fuels--such as propane,
    fuel oil, or wood; often do not govern emergency situations; and do not
    relieve low-income families of the ultimate obligation to pay for their
    home energy costs when the moratoria end. In addition, HHS reports that
    one-third of LIHEAP-recipient households use bulk fuels; thus, are
    unprotected. In states such as Wisconsin, Minnesota and New Hampshire
    between 30 to 40 percent of their low-income households use unregulated
    fuels.
        With higher payments for home heating fuel, low-income families
    face tough choices: heat-or-eat; go further into debt which will
    jeopardize their ability in the future to become self-sufficient; or
    use potentially unsafe alternative methods to heat which could result
    in tragedies. Elderly households might use single room space heaters
    and turn their thermostats down; these actions will increase the risk
    of hypothermia for these customers. Yet other low-income customers will
    move households together to make ends meet. Tragically, overcrowded
    substandard housing, and the improper use of space heaters have proven
    to have disastrous consequences in our communities.
                        targeted liheap block grant works
        Mr. Chairman, LIHEAP works! As designed by the Congress, LIHEAP is
    a block grant that is targeted to assist low-income households with the
    costs of home energy. While there are broad federal guidelines for
    LIHEAP, the states are encouraged to tailor their programs to best meet
    their individual needs. The Governors determined what agencies should
    administer the program, what eligibility standards will be used, how
    benefits will be structured, the guidelines for the crisis program, and
    the range of assistance to be rendered.
        In addition to program flexibility, the administrative costs of the
    program are minimal--in the range of seven to eight percent. This
    ensures that the majority of LIHEAP dollars (generally 92 to 93
    percent) are directed to energy assistance benefits for the low-income
    families that it was intended to help. Carry-over funds are minimal and
    typically run about 3 percent in most years. Late funding decisions by
    the Congress have unfortunately forced some states to further restrict
    eligibility and to reserve additional start-up funding for September.
            liheap is the centerpiece of private and utility efforts
        The burden of low-income household needs does not rest solely on
    the Federal Government. Our member companies are involved in and
    concerned about the well-being of our communities--both in economic and
    human terms. The states and the private sector recognize their
    responsibility to contribute to the needs of these consumers.
        UDC member companies have developed a host of innovative and
    effective programs to assist their low-income consumers; these include:
    operating and/or contributing to fuel funds; providing discounts and
    credits to low-income customers; providing partial or full waivers of
    home energy connection and reconnection fees, and late payment charges;
    partial or full waiver of home energy security deposits; and partial
    forgiveness of home energy arrears. Moreover, many of our companies are
    involved in various energy conservation/management activities. Overall,
    millions of dollars each year are dedicated to assisting the low income
    with their fuel bills. However, these efforts and most other private
    efforts are built around LIHEAP as their cornerstone. Private
    charitable efforts alone cannot take up the slack for reduced federal
    funding.
       changing energy policies & utility restructuring create uncertainty
        More than 50 percent of low-income households in this country heat
    their homes with natural gas. Federal and state policies favoring
    greater competition in both the electric and natural gas industries
    have shifted significant costs away from industrial customers, and
    other users with energy alternatives, to residential customers. These
    households are now paying a higher share of the costs of purchasing and
    transporting natural gas today than they did in 1980, when LIHEAP was
    first created. Thus, low-income households continue to face increasing
    energy burdens.
        According to a 1994 report by Oak Ridge National Laboratory, many
    low-income households' expenditure for residential energy (their energy
    burden) exceeds 30 percent of income. The report also states that all
    the low-income households which are federally eligible for LIHEAP spend
    over $1,000 per year or 10 percent of income on energy. Typically, low-
    income households pay four times the percentage of monthly income for
    energy costs than an average household in America pays. In Illinois,
    the average family pays 5.9 percent of its income on home energy in
    winter, while the average low-income family pays between 20-37 percent
    of income for these energy bills.
        In recent testimony before the House Subcommittee on Early
    Childhood, Youth and Families, Joel Eisenberg, Senior Analyst for
    Public Policy at Oak Ridge testified on the potential impact of the
    restructuring of the electric industry on low-income households. He
    stated that there is ``substantial uncertainty as to whether
    residential consumers in general, and low-income consumers in
    particular, will benefit from these changes to a significant degree. In
    some places there is concern that residential rates may actually
    increase.'' Eisenberg noted that momentous change in the electric and
    gas industry is in process. He cited recent data for the natural gas
    industry from the Energy Information Agency (EIA) which indicate that
    between 1985 and 1995, savings for residential consumers have been
    relatively small so far--in the range of 1 percent (EIA Monthly Energy
    Review, February 1997).
        Deregulation and increasing competition create intense financial
    pressures on gas and electric utilities. As a result, these companies
    cannot afford to shoulder the burden associated with serving low-income
    households without government support in the form of continued LIHEAP
    funding. Since its inception, LIHEAP has been a strong and successful
    public-private partnership that has worked to address the problem. If
    government pulls out of this partnership, a serious financial hardship
    will be created for our low-income citizens. LIHEAP maximizes the
    opportunities for success in helping our low-income customers.
                                   conclusion
        Mr. Chairman, the House Subcommittee on Early Childhood, Youth and
    Families held a hearing examining the LIHEAP Program on April 8th.
    Witnesses included Members of Congress, as well as representatives from
    the states, and the private and public sectors. The panel included a
    representative from a local agency and a former LIHEAP-recipient.
        The witnesses strongly endorsed LIHEAP, and cited the need for more
    adequate funding. The stories about low-income households that have
    benefited from the program were compelling. The Maryland LIHEAP-
    recipient described her situation as the primary wage earner with a
    family of four children. Behind in her utility payments, this divorced
    mother was scheduled to be disconnected. Qualifying for LIHEAP was the
    linchpin to securing continued utility service and working out a long-
    term repayment schedule.
        The witness representing a local agency recounted information about
    numerous beneficiaries of the program, including a divorced mother in
    her thirties with three young children. Recently diagnosed with cancer,
    this mother had to quit her job in January when she developed side
    effects to the chemotherapy. This forced her to go onto AFDC and file
    for disability. Her income dropped from $1,600 to $406 per month;
    consequently, she fell behind in her utility bills. LIHEAP helped
    bridge the gap during this crisis. As the House witness cited, ``This
    is an example of the kind of situation that can plunge a self-
    sufficient working family into poverty.''
        Mr. Chairman, the changes in the welfare system adopted in the last
    Congress will have profound implications. As families move from
    dependence towards independence, they will need targeted supplemental
    assistance. Families in transition normally start at, or near, minimum
    wage levels. In order for them to continue working and gaining
    employment experience, so that they can be eligible for better jobs in
    the future, they need help to maintain a basic standard of living from
    programs such as LIHEAP.
        As the winter ends, problems for the poor do not! The spring brings
    collections pressures on unpaid heating bills. Without the safety-net
    afforded through LIHEAP low-income households could lose gas and
    electric service. The truth is simple. LIHEAP is a public-private
    partnership program that works for low-income households and helps to
    make energy service available and more affordable to them.
        Mr. Chairman, we commend you for your leadership on this issue. We
    look forward to working with you and providing any supporting facts and
    information that might be helpful to you in your efforts to secure at
    least $1.319 billion in regular funding for LIHEAP in fiscal year 1998,
    and an advance appropriation for fiscal year 1999 at that same level.
                                     ______

    Prepared Statement of Anne D. Stubbs, Executive Director, Coalition of
                             Northeastern Governors
        The CONEG Governors are pleased to provide testimony for the record
    to the Senate Subcommittee on Labor, Health and Human Services,
    Education, and Related Agencies as it considers fiscal year 1999
    advance appropriations for the Low-Income Home Energy Assistance
    Program (LIHEAP). The CONEG Governors appreciate the support provided
    by the Committee in maintaining this important program, and urge the
    Committee to provide advance funding at the current appropriations
    level of $1 billion for fiscal year 1999. In addition, we are
    requesting that additional funding authority be provided to allow for
    the release of emergency funds in the event of continued volatility in
    energy markets, colder than normal winters, and other potential
    emergencies.
        During the current fiscal year, almost 1.5 million very low income
    households in the Northeast states will receive LIHEAP assistance.
    About 40 percent of these households are disabled or elderly, and many
    live on fixed incomes. The majority of the region's recipients are very
    poor with annual incomes of less than $8,000 per year. For many of
    these recipient households, annual income is not sufficient to pay high
    winter heating bills.
        The retail price of heating oil, propane and natural gas increased
    significantly this past heating season. Price increases in heating oil
    pose a particular problem in the Northeast because the region accounts
    for close to 75 percent of all heating oil consumed in the country due
    to the rapid volatility in energy prices. Therefore, regular LIHEAP
    funding this year was not adequate to meet the heating assistance needs
    of program recipients. The release of emergency funds in February
    helped to offset the impact of the last year's price increases and
    eased the financial burden on low-income Americans in the Northeast as
    well as in other parts of the country.
        The availability of advance funding for fiscal year 1998, approved
    as part of the Fiscal Year 1997 Labor, Health and Human Services,
    Education and Related Agencies Appropriations Act, will play a
    significant role in helping states plan their programs prior to the
    start of the winter heating season. In the Northeast, the winter
    heating season often begins before the completion of the annual
    appropriations process. By providing advance funding, states can plan
    the orderly allocation of funds, thereby reducing administrative costs.
    It also allows states to coordinate outreach and prioritize program
    goals and components more efficiently.
        LIHEAP funds play a major role in helping to make home energy more
    affordable for low-income households in the Northeast. Program funds
    are targeted to those with high energy burdens, averaging 15 percent of
    household income, approximately four times the rate for all households.
    The program has been very successful in helping low-income households
    pay their energy bills, thereby preventing fuel supply shut-offs.
        States have established programs throughout the Northeast to
    leverage additional funds from the private sector. These programs
    include requiring margin-over-rack and oil bid programs to provide the
    lowest possible prices for heating oil; initiating partnerships with
    utilities to provide discounts and avoid shutoffs; and exploring
    options for purchasing natural gas through cooperative arrangements
    with local governments. States are also establishing closer links
    between energy conservation services and LIHEAP, thereby helping to
    reduce long-term energy bills.
        As a result of the increasing volatility in energy prices, states
    are also exploring the use of summer fill programs to purchase oil
    during the summer months when prices are low, thereby increasing the
    purchasing power of program funds. Last summer for example, New
    Hampshire purchased close to $1 million in heating oil, thereby
    protecting low-income households in their state against last year's
    rapid price increases.
        States have also adopted various administrative strategies designed
    to minimize the amount of program dollars that are used to operate the
    program, thereby allowing more funds to be used for assistance. LIHEAP
    administrative costs are among the lowest of human service programs.
    States pay less than $25 per household for program administration.
        Specific examples of innovative administrative strategies include
    the development of uniform application forms to determine program
    eligibility, establishment of a one-stop shopping approach for the
    delivery of LIHEAP and related program services, and the use of mail
    recertification. For example, the state of Maine has recently developed
    a streamlined delivery system which includes an abbreviated
    application, a prioritized interview form, and a computerized model of
    household fuel usage. This approach has significantly shortened the
    time period for processing and distributing fuel assistance benefits.
        As another example, Pennsylvania has established a project
    combining weatherization and LIHEAP emergency services into one agency
    in order to better serve program clients with life or health-
    threatening situations. Services are provided for clients who need
    weatherization-type emergency service. Households can be eligible for a
    number of energy systems repair and replacement programs in addition to
    direct fuel assistance.
        Electric utility industry restructuring is also expected to
    highlight the continued need for LIHEAP assistance. As the region
    begins to open electricity markets to competition and traditional
    pricing mechanisms change, supplemental LIHEAP assistance currently
    provided by utilities could be eliminated as competition becomes an
    increasingly important factor in pricing. Utilities will be less able
    to support programs providing discounted services unless these services
    are required of all energy providers. As a result, LIHEAP is likely to
    remain, for the foreseeable future, the primary source of energy
    assistance for low-income households.
        CONEG is pleased to have had the opportunity to share its views
    with the Subcommittee, and stands ready to provide any additional
    information about the importance of LIHEAP in meeting the home heating
    needs of low-income, disabled and elderly residents of the Northeast.
                                     ______

                    DEPARTMENT OF HEALTH AND HUMAN SERVICES

     Prepared Statement of Michael Alden, Southwest Texas State University
        Mr. Chairman and Members of the Subcommittee, my name is Michael
    Alden and I am the chairman of the National Youth Sports Program (NYSP)
    Committee of the National Collegiate Athletic Association. I am also an
    athletics director at Southwest Texas State University, located in San
    Marcos, Texas. I appreciate this opportunity to testify in support of a
    fiscal year 1998 appropriation for the NYSP.
        As your Subcommittee takes stock of the hundreds of programs under
    its jurisdiction this appropriations season, it is my hope that you
    will give careful consideration to the merits of the NYSP. I understand
    the constraints you are under to allocate federal dollars carefully and
    am sympathetic to the challenges you face in selecting which programs
    will continue to receive federal funds. I ask you to consider that the
    NYSP is a successful public/private partnership that utilizes the best
    resources our nation's colleges and universities have to offer to help
    build healthy, drug-free communities by allowing young people from
    disadvantaged backgrounds to participate in summer sports, academic
    enrichment, and fitness education programs coupled with free medical
    and dental exams.
        The NYSP partnership enlists the support of the federal government,
    represented by the U.S. Department of Health and Human Services, the
    nation's colleges and universities and the National Collegiate Athletic
    Association (NCAA), to offer youth who come from low-income families
    aged 10-16 with five weeks of sports, physical fitness and educational
    instruction during the summer months. The NCAA's resources help provide
    administrative support so that all the federal dollars can be used to
    support the local community programs. Thanks to this team effort, the
    NYSP has developed into a program that has grown from two institutions
    in its first year to 172 today.
        The NYSP generates $3 for every federal dollar allocated, provides
    an exceptional athletic and academic opportunity to nearly 70,000
    students from disadvantaged backgrounds in forty-seven states at a cost
    of less than $7 per day per child, and all of the program's
    administrative costs are borne by a private foundation.
        Young boys and girls of all economic backgrounds enjoy sports.
    Unfortunately, the privileges of good coaching and education about the
    long-term benefits of physical fitness are inadequately extended to low
    income families. The need for quality athletics opportunities, both
    organized and self developing, among low-income children is widely
    recognized. For 28 years the NYSP has addressed this need. Through the
    NYSP, the federal government invests a modest amount of federal funds
    to reap tremendous rewards that benefit tens of thousands of children,
    positively influence our communities and contribute toward shaping our
    nations future.
        One distinguishing feature of NYSP is its location on college and
    university campuses. Utilizing the personnel and facilities of higher
    education introduces students to a different environment, one comprised
    of high quality resources and free from the threats and dangers of many
    of their communites. Participants have the opportunity to see the
    institution from the inside; to walk the halls and engage in activities
    in the classrooms. They are also surrounded by college students and
    faculty who have worked to be there and value the opportunity to be
    part of the college community. This glimpse of the world of
    postsecondary education is part of the NYSP strategy to encourage youth
    to aspire beyond their current school life. The NYSP motto is ``NYSP
    helps youngsters walk tall--talk tall--stand tall.'' And after a summer
    with us--they do.
        Each NYSP program is lead by a full time employee of the
    university, who supervises an administrative, instructional, and
    support staff. The program employs a local staff of instructors and
    support people to maintain an instructional participant-to-staff ratio
    between 15 and 20 to 1. NYSP sites are carefully selected by a review
    panel and once an institution joins the NYSP, it must maintain rigorous
    criteria to remain a designated NYSP site.
        The NYSP also works closely with many of sports' National Governing
    Bodies (NOB) such as U.S. Swimming, U.S. Tennis Association, U.S.
    Soccer, U.S. Volleyball and U.S. Softball. The NGB's provide qualified
    instructors who administer innovative developmental programming that
    encourages youth to participate in sports. Every NYSP project offers at
    least three of the following sports: badminton, basketball, dance,
    football, gymnastics, physical fitness, soccer, softball, swimming,
    tennis, track and field, volleyball, and wrestling. Other sports of
    local interest also can be included. Appropriate supplies, including
    athletic equipment, swim attire and staff apparel are provided by the
    NCAA. The NYSP programs' goals reach beyond sports instruction to
    broader goals of wellness and physical fitness.
        In addition, since 1991, the NYSP educational program has featured
    classes in math and sciences. These programs have been combined with
    ongoing activities in alcohol and other drug prevention, nutrition,
    disease prevention and personal health. In addition, each program has a
    component that addresses career opportunities, higher education and job
    responsibilities. Borrowing the teaching model used in the sports
    component, the education sessions consist of interactive activities for
    all participants.
        The goals of NYSP regarding alcohol and substance abuses are also
    important national goals. A number of recent studies have indiacted
    that an increased number of American youth use tobacco and alcohol. For
    example, the Nation Institute on Drug Abuse's 1995 ``Monitoring the
    Future'', study reported that the percentage of 8th, 10th and 12th
    graders who smoke cigarettes daily, increased for 1991 to 1995. NYSP
    has devoted a special education focus on helping youth understand the
    consequences of using alcohol and tobacco. Such efforts to dissuade our
    nation's youth are indeed valuable. Not only does the NYSP provide an
    environment that encourages a healthy life-style but it also teaches
    respect for self and others through team activities, educational
    programs, and interaction with community role models.
        Healthy individuals contribute to healthy communities. Both are
    essential to a healthy and productive economy and to the pursuit of
    happiness so important since the time of our founding fathers and
    mothers. With help from the local medical community, each of the
    programs' participants (minimum of 250 boys and girls at each campus)
    receives a free medical examination before the program session
    commences. In 1996, over 69,000 medical examinations were administered.
    If a health problem is found, the child is referred for adequate
    follow-up treatment. Over 15,900 participants were referred to
    physicians for follow-up medical attention last year. If children are
    injured or become ill during NYSP activities, they are covered by
    health insurance and treated by a certified medical professional.
    Additionally, the NYSP provides at least one hot United States
    Department of Agriculture-approved meal each day of the program.
        The NYSP ensures the effectiveness of its programs by involving
    local community leaders through its advisory committee and by working
    closely with the mayor or city manager. At all participating
    institutions, an advisory committee is comprised of representatives
    from the local agencies such as the Housing Authority, private
    industry, state government and the public schools. In addition,
    projects collaborate with the local community action agency to help
    identify the eligible youth.
        In fiscal year 1997, Congress appropriated $12 million for the
    NYSP. As the committee can probably understand, the demands for the
    NYSP in rural and urban settings have never been greater. The NYSP is
    under constant pressure to expand its programs, yet we are aware of the
    budget problems in Washington, D.C. and understand that all programs
    must shoulder the burden. On behalf of the 172 NYSP programs and 70,000
    young people who annually participate in the program, we respectfully
    request $15 million for fiscal year 1998. This slight increase will
    enable over 44,000 youth to participate in math and science education
    programs; serve 25 additional communities with a program thereby
    reaching 9,250 additional youth, extend the programming year-round for
    8,000 participants and provide technical training to personnel to
    enable them to meet the needs of participants youth and communities.
        A child needs direction to develop into a productive adult,
    especially when facing the challenges of growing up in an economically
    disadvantaged environment. In communities across the nation, parents
    are eager for their children to be part of a NYSP summer sports camp.
    They apply early and the waiting lists grow longer each year. They know
    the NYSP is more than fun and games. The NYSP provides a positive,
    nurturing environment where young people from disadvantaged backgrounds
    are given an opportunity to benefit from athletics participation, team
    play, group self-esteem building activities, a medical physical exam,
    hot nutritious meals, and educational programs on a college campus at
    no cost to the student or his parents.
        I encourage each member of this Subcommittee to visit a NYSP site
    in your home district to see first-hand what a life-changing
    opportunity the program is for the young people who participate. A list
    of each participating institution is attached to this statement and I
    assure you the children, their parents, NYSP staff and campus officials
    would warmly welcome you.
        Thank you again for allowing me to present this message on behalf
    of this worthwhile program. I would be pleased to answer any questions
    members of the Committee may have regarding NYSP.
                                     ______

    Prepared Statement of Denis Murstein, Administrative Director, Illinois
                             Collaboration on Youth
        Mr. Chairman and Members of the Subcommittee: On behalf of the
    Illinois Collaboration on Youth (ICOY) and all the young people,
    families and communities who benefit from the work of the nearly one
    hundred community-based youth serving agencies that we represent, I
    want to thank you for providing us the opportunity to present our views
    before this body.
        I write to urge you to continue to ensure that young people develop
    into healthy and productive adults. Since 1974, Congress has
    successfully challenged local communities to allocate their resources
    toward this end. The Runaway and Homeless Youth Act (RHYA), Title III
    of the Juvenile Justice and Delinquency Prevention Act, has been the
    foundation of support for sheltering millions of youth who are in need
    of temporary services and, most importantly, reuniting hundreds of
    thousands of families in crisis.
        The RHYA, with its three major programs--Basic Center (BC),
    Transitional Living Grants Program (TLP) for homeless youth, and Street
    Outreach (SO)--is integral to the safety and positive development of
    young people who run or are homeless. It is crucial that Congress fund
    these cost-effective programs at the highest levels.
        In my nearly twenty years of experience in working with and on
    behalf of young people and their families, I have experienced the
    greatest amount of pride in being associated with the many fine people
    who have dedicated their lives to reaching out to youth in high-risk
    situations. Groups such as the National Network for Youth, based in
    Washington, DC, have worked tirelessly to develop and disseminate best
    practices that help BC, TLP, SO, and other youth programs build capable
    youth, strong families and responsible communities.
        Sometimes, for example, a young person may run away or be forced
    from their home due to an untenable situation, such as physical or
    sexual abuse. Feeling frightened, they may not think of what is
    available in their own neighborhood--they just go. To that young person
    at that point in time, it's a matter of survival. In situations like
    this--and there are literally hundreds occurring every day throughout
    the U.S.--I am truly grateful that the federal government has taken
    leadership in providing and directly funding a system of intervention
    for youth in crisis--many of whom cross state lines--that does not
    burden law enforcement and juvenile justice authorities.
        As an active and concerned member of my community, and as a parent,
    I am comforted to know that there exist safe places which are
    accessible to all young people in need. I also value the national
    communications system, funded through the Basic Center Program,
    operated by the National Runaway Switchboard in Chicago. Through a
    toll-free number, young people in crisis can reconnect to their
    families and be referred to services that will help them.
        While communities differ and their responses to problems are
    congruent with their unique needs, the challenges confronting our
    nation's young people on their path to adulthood cut across racial,
    ethnic and economic boundaries. Several years ago, I was privileged to
    serve as director of a shelter for girls located in the north suburban
    Chicago area. The program was of modest budget by any standard, but
    incredibly effective.
        With only eleven beds available at any time, more than two hundred
    and fifty girls were provided temporary shelter in any given year.
    Ninety-five percent were reunited with their families, with continued
    counseling support. I am certain that without the availability of that
    program, ninety-five percent of those girls would have had no other
    place to go than to the state's child welfare system. But, this is not
    the exception. This is merely typical of the miracles performed by the
    programs you have funded under the Runaway and Homeless Youth Act.
        What is even more incredible is that prior to 1974, the year the
    Juvenile Justice and Delinquency Prevention Act (JJDPA) was first
    authorized, those same girls, under the same circumstances, would have
    been locked up in jail. More than twenty years later, it's difficult to
    even imagine a time when young people in this country were locked up,
    for lack of an alternative, after having undergone the trauma of abuse.
    Perhaps more than any other benefit, I am most grateful for the
    conversion from wasted human potential to maximized human capital that
    has been realized due to the existence of these programs. It reinforces
    one of the basic tenets of the Act: Young people who run away or have
    been forced to leave their homes, but who have not committed crimes,
    should not be locked up in jails, detention or other facilities.
        From an appropriations standpoint, I cannot overestimate the
    dividends which are realized from the state and local levels as a
    result of a relatively modest federal investment. In fiscal year 1996,
    the appropriation for the Basic Center program was $40.458 million.
    Illinois' formula share of that was $1.621 million. These funds were
    distributed to seventeen programs throughout the state--from Omni Youth
    Services in the northern Cook and Lake County suburbs of Chicago and
    Aunt Martha's Youth Service Center in Chicago's far south suburbs, to
    McHenry County Youth Service Bureau up near the Wisconsin border and
    Franklin-Williamson Human Services at the southern tip of the state
    extending to the Kentucky border.
        I am appreciative of the opportunity to present to this body and
    even briefly convey to you the remarkable story of these wonderful
    programs. While I am most familiar with Illinois, whenever I come into
    contact with colleagues from other parts of the country--Texas,
    Oklahoma, Florida, California, our neighbors up in Wisconsin and Ohio--
    I know that they are similarly committed to serving young people and
    their families in their respective communities. You have been
    supportive and I hope that some day you will help us expand RHYA as a
    community-based system of opportunities, services, skills and
    experiences for youth, so that all young people have the chance to
    become the kind of parents, workers, neighbors and citizens we value.
                                     ______

      Prepared Statement of the Network of University Affiliated Programs
        Mr. Chairman and Members of the Committee:
        In July 1996, the U.S. Congress agreed, by unanimous consent, to
    reauthorize the Developmental Disabilities Assistance and Bill of
    Rights Act (Public Law 104-183) for three more years. The overwhelming
    support for reauthorization of this important law showed that Congress
    places a high value on recognizing the rights of people with
    developmental disabilities and their families to live independent,
    productive lives with in the community.
        Under Public Law 104-183, the University Affiliated Programs
    (UAP's) have been making a difference in the lives of persons with
    developmental disabilities for over 35 years. UAP's were designed to
    respond to the needs of individuals and families by training
    professionals for leadership positions in the field of disabilities;
    working with community services to ensure that people with
    developmental disabilities do not fall between the cracks in the
    service delivery system; conducting research and validating state-of-
    the-art practices in the field of developmental disabilities; and
    disseminating research findings to individuals with disabilities,
    family members, professionals, and policy-makers.
        Today, there are over 60 UAPs, with at least one in every state and
    territory in this nation. UAPs serve as a bridge between University
    training and research and the provision of direct services in the
    community. Core funding for UAP's is provided by the Administration on
    Developmental Disabilities (ADD) in the Department of Health and Human
    Services. In addition, the Maternal and Child Health Bureau (MCHB)
    provides funding for highly specialized training to ensure that the
    State Title V programs will be able to meet the needs of mothers and
    children with special health care needs.
    Preparing Personnel for the Future
        Virtually all individuals with developmental disabilities wish to
    live independent and productive lives in their own communities. To do
    so requires access to appropriately trained support personnel.
    Unfortunately, there continue to be critical shortages of well-trained
    professionals, including occupational and physical therapists, speech-
    language pathologists, nutritionist educators, physicians, and nurses.
    Furthermore, well-trained personnel are needed to support the
    implementation of federal disability policy and legislation in such
    areas as health and related agencies (MCHB), early intervention and
    related services (IDEA), and Assistive Technology (The Technology-
    Related Assistance Act)
        UAP's have a unique ability to work in a coordinated fashion to
    address the needs of people with developmental disabilities and are the
    only university-based program that addresses issues that are (1)
    lifespan appropriate, (2) interdisciplinary, and (3) cross service
    systems through training. ADD support allows UAP's to maintain this
    unique infrastructure within the university system and establishes a
    mechanism by which UAP's can garner additional support for the actual
    implementation of training programs.
        Example: UAP's, with federal assistance from the Maternal and Child
    Health Bureau, support 34 projects prepare professionals for leadership
    roles in health and related professions that care for infants, children
    and adolescents with, or at risk for, neurodevelopmental and related
    disabilities. The principal purpose of the LEND projects is to support
    the Maternal and Child Health Services Block Grant (State Title V
    programs) by providing technical assistance and trained leaders in
    health professions to meet new and emerging needs of children with
    disabilities.
    Improving the System Through Direct Services and Supports Using
            Community Training and Technical Assistance
        UAP's provide family and individual support services, as well as
    personal assistance, clinical, health, prevention, education,
    vocational, and other services. This support could include training
    staff to provide direct services providing family support and
    diagnositic services to children and adults with developmental
    disabilities.
        Example: The UAP in Illinois developed assessment tools that have
    been used to facilitate the transfer of 80 persons with developmental
    disabilities who were inappropriately placed in nursing homes, to more
    appropriate community settings. To support this process, the UAP also
    operates one of the largest family support and diagnostic clinical
    programs in the Midwest.
        Over the past few years, technical assistance provided by the UAPs
    has had a significant impact on the provision of technical assistance
    and community training. For many UAPs, it is the technical assistance
    activities, as opposed to the provision of direct services, that has
    had the greatest impact on ensuring that existing state and local
    service delivery systems can adequately respond to the needs of people
    with developmental disabilities. In this regard, UAPs do not duplicate
    existing services; rather, they work to ensure that existing services
    are equipped to serve people with developmental disabilities. The
    faculty and staff expertise located at UAPs is brought to bear in an
    effort to respond to the changing needs of individuals with
    disabilities.
        Example: In 1992, the UAP at Temple University in Philadelphia
    began implementing Pennsylvania's Initiative on Assistive Technology
    (PIAT). This initiative established a statewide system to provide
    needed assistive technology services and equipment, through a direct
    loan program, to all citizens with disabilities in the Commonwealth.
                   research and dissemination of information
        University-based programs engage in research and evaluation
    activities to address the needs of the developmental disability system.
    Information from UAP research is used to better understand and guide
    policy and practice in the field.
        Example: Congress has supported the national commitment to collect
    information and measure outcomes on our Nation's success at providing
    care for our citizens with developmental disabilities through the
    Projects of National Significance longitudinal data sets. The data
    collected provide meaningful guidance for Governors and State
    Legislators to evaluate, plan and implement policy in order to achieve
    desired outcomes. Through the Projects of National Significance (PNS),
    data is available on where people with developmental disabilities live
    and work. The State of the States in Developmental Disabilities,
    authored by the UAP at the University of Illinois in Chicago, provides
    information to governors and state legislators on how state dollars are
    spent for care and services for persons with developmental
    disabilities.
        UAPs also use cutting edge technology to provide individuals with
    disabilities and their families access to existing information.
        Example: The Family Village project at the Waisman Center in
    Wisconsin is an Internet system designed to help families with
    disabilities network with other families around the world. In addition,
    the system provides families with organized listings of existing health
    and community services that are available.
                         leading through collaboration
        UAPs are expected to provide leadership to the field of
    developmental disabilities, to initiate new service models, to evaluate
    current efforts, to determine their efficiency, and to address new
    initiatives and changes as the developmental disabilities field
    advances. Some of these advances have included programs in the areas of
    supported work, early intervention services, assistive technology,
    health care and AIDS research. Much of the training material for new
    initiatives such as these has been developed in the UAPs and have been
    made available at the national level for service agencies to use.
        Collaboration happens at multiple levels. UAPs work both locally
    and nationally with sister developmental disabilities programs to
    ensure that people and families have access to a full continuum of
    rights and care. UAPs also collaborate with other federal agencies to
    bring developmental disabilities expertise to their ongoing work.
        Example: UAPs are working with the Administration on Children and
    Families/Children's Bureau to impact special needs adoption. With the
    appropriate training for adoption personnel and potential parents, more
    children with special needs will be adopted by loving families rather
    than living in foster homes. In Pennsylvania, Project Star is working
    closely with parents who give birth to a child with a developmental
    disability, providing supports and services for the family in an effort
    to help families feel comfortable in keeping their child.
                              funding for the uaps
        Although the UAP network receives a very minimal level of federal
    funds through appropriations to the developmental disabilities program,
    this support is extremely powerful. UAPs are state-federal
    partnerships. More than 29 percent of the money that funds UAPs comes
    from the states. Most of the federal money is in short-term research,
    demonstration, and training projects that benefit the state as well as
    the nation in developing new cutting-edge approaches to address the
    needs of persons with disabilities in our nation. The ADD is a small
    source of fiscal support to UAPs, but it is the most critical funding
    in that it gives them their identity and focus. Without such funding,
    UAPs would break apart into fragmented projects, each engaged in its
    own activities, and the focused approach to the needs of people with
    disabilities in state service agencies and in the national agenda
    towards independence and efficiency would therefore be lost.
        While the federal investment in UAPs through ADD is very minimal, a
    significant impact is achieved by bringing to bear the resources of the
    university and other funding sources at the state and national levels
    to address developmental disability problems. With federal support,
    UAPs can continue not only to provide leadership on cutting-edge issues
    such as supported work, early intervention, assistive technology and
    AIDS research, but to resolve complex challenges in understanding and
    serving people with severe cognitive and behavioral problems and to
    develop innovative and effective ways to support these individuals to
    achieve greater independence and productive lives. The results of these
    developments contribute not only to the growth and development of each
    person, but also to a much more cost effective support system that
    emancipates people from dependency upon public supports.
        As the nation moves further in the direction of state/local
    decision-making, UAPs will be more important than ever as existing
    community programs depend on UAPs to supply them with well-trained
    professionals and to ensure that the service meets the needs of the 3
    million people nationwide who have a developmental disability. Because
    of changes to the nation's welfare system, it is estimated that over
    135,000 children with special health care needs/disabilities will lose
    their Supplemental Security Income (SSI) payments. Up to 50,000 of
    these children are expected to also lose their Medicaid eligibility.
    The families of these children will turn to care provided at UAPs,
    hospitals and clinics supported by Administration on Developmental
    Disabilities (ADD) funds and Maternal and Child Health Block Grant
    (MCH) funds. This new demand on services will put a further strain on
    already limited ADD and MCH dollars. UAP and LEND Project staff are
    already working on the state level to provide evaluation services and
    training for state disability determination officers to ensure that
    families of children currently receiving SSI will be properly evaluated
    under the new law.
        In addition, there is an ever increasing need for well-trained
    professionals to work in the field of developmental disabilities
    because of societal increases in violence, drug abuse, teen pregnancy
    and poverty which are putting more children at risk each day of being
    born with a developmental disability. States and local communities will
    have to deal with the complex needs of these children and can rely on
    the guidance and expertise of the University Affiliated Programs to
    help them cope with the responsibility of caring for this new
    generation of children with special needs, but only if funding is
    available to keep the programs running. Lack of funding for training of
    professionals, advice for state policy makers, and services that keep
    families together will result in a disintegration of coordinated
    services for people with developmental disabilities.
        While Congress is working to streamline the budget, UAPs are
    working to bring together various fragmented federal and state programs
    in an effort to provide coordinated care for the nation's most
    vulnerable population. UAPs are part of the ideal vehicle by which this
    objective can be realized in the disability field. Support for the
    innovative work of the UAPs, which foster independence and quality of
    life for all Americans, saves money by helping people to live and work
    within their own community, and provides a coordinated system of
    protection and care that is critically needed. This is a goal that can
    be accomplished only with substantial federal support.
        The American Association of University Affiliated Programs for
    Persons with Developmental Disabilities (AAUAP) therefore recommends
    that $20 million be provided for the UAP system for fiscal year 1998.
    This number represents level funding based on fiscal year 1995 with a
    CPI increase built in for inflation. AAUAP also recommends that $6.1
    million be provided for Projects of National Significance.
    Additionally, the AAUAP recommends that $705 million be provided for
    the Maternal and Child Health Block Grant.
                                     ______

     Prepared Statement of Merle Boyd, Acting Principal Chief, Sac and Fox
                                     Nation
                                  introduction
        Honorable Chairman Arlen Specter, Senator Tom Harkin and
    distinguished Members of the Committee, I am Merle Boyd, Acting
    Principal Chief of the Sac and Fox Nation, located in the State of
    Oklahoma. I thank the Committee for this opportunity to present written
    testimony on the fiscal year 1998 fiscal year budget for the Department
    of Health and Human Services.
                             appropriation requests
        Provide Federal subsidy to Tribes for States who opt not to include
    State matching funds in a Tribal TANF Plan;
        Provide $50,000 to each Tribe administering TANF to purchase
    computers and software for record automation, complete training and
    obtain technical assistance for tracking requirements under the
    Personal Responsibility and Work Opportunity Reconciliation Act;
        Provide additional funds to Tribes which cannot produce employment
    opportunities for families residing in Indian Country in order to
    prevent complete loss of essential benefits for a needy household; and,
        Provide direct funding to Tribal courts and law enforcement
    officers to enforce juvenile provisions in Indian country.
    impact on indian country--personal responsibility and work opportunity
                           reconciliation act of 1996
        The primary purpose of our statement to the Committee is to once
    again address the concerns of Indian Country regarding the Personal
    Responsibility and Work Opportunity Reconciliation Act of 1996 and the
    respective fiscal year 1998 appropriations that will be made to support
    the new Law. Welfare Reform as we know it today, encompasses each
    Federal Department under the jurisdiction of this Committee. Many of
    our federally funded programs are vital to the well-being of our Tribal
    members. As Congress and the Administration undertake activities
    affecting Native American tribal rights, trust resources, and essential
    human services, such activities should be implemented in a
    knowledgeable manner that is sensitive to our tribal sovereignty. This
    has NOT occurred under the new welfare reform law in all states,
    inclusive of Oklahoma.
                        technical amendments (h.r. 1048)
        The technical amendments developed thus far for the Personal
    Responsibility and Work Opportunity Reconciliation Act of 1996 (H.R.
    1048), do not adequately address our service responsibilities or
    appropriation needs. The Sac and Fox Nation has appeared before House
    and Senate Committees since the U.S. House of Representatives first
    began consideration of H.R. 4 in the 104th Congress. We have addressed
    our concerns for the record, but to no avail. Unfortunately for Indian
    Country, our early predictions and estimates of potential harmful
    impact have come to fruition.
               narrative justification on appropriation requests
        Provide Federal subsidy to Tribes for States which choose not to
    include State matching funds in a Tribal TANF Plan. Regretfully, I
    cannot ascertain the amount of appropriations needed for the Sac and
    Fox Nation or adequately project the appropriation needs for other
    Tribes, regionally or nationally. To date, the State of Oklahoma is
    unable to provide accurate figures to Tribes for the anticipated
    caseload demands if TANF is to be transferred from the State. However,
    the Act only mandates that states provide the federal share of funding
    to a Tribal government that opts to administer its own TANF. Without
    the use of state funds that will otherwise be made available to needy
    families participating in a state TANF program, Tribes cannot sustain
    equitable services to Indian households in Indian Country. Indian
    citizens will essentially be denied equal protection and equal access
    under this law. Therefore, we ask the Committee to subsidize Tribal
    TANF's with funds that will not otherwise be made available by a state
    that chooses not to apportion matching funds to a Tribe administering a
    TANF program.
        Provide $50,000 to each Tribe administering TANF to purchase
    computers and software for record automation, complete training and
    obtain technical assistance for tracking requirements under the
    Personal Responsibility and Work Opportunity Reconciliation Act. The
    Act does not provide funds to Tribes to purchase tracking equipment
    such as computers and software for or record automation. Yet, Tribes
    who desire to administer TANF must implement administrative data
    collection and reporting requirements, manage records, and implement an
    automated tracking system, locally, regionally, nationally and on an
    inter-national basis. States have had 60 years to develop, demonstrate
    and implement a complete infrastructure for this purpose. Further,
    States have received appropriations over the years to fulfill this
    requirement under AFDC and related programs. States have the necessary
    infrastructure in place and will be able to meet the requirements of
    the Act. The Tribes cannot, reasonably be expected to be successful
    without ANY appropriations to establish these system requirements and
    for authorized access to State data tracking programs, unless
    appropriations are made for this purpose.
        Provide additional funds to Tribes which cannot produce employment
    opportunities for families residing in Indian Country in order to
    prevent complete loss of essential benefits for a needy household. The
    Act provides that families residing on reservations will be dropped
    from the welfare rolls when their time limit is up even if they have
    not secured a job. The reality in Indian country is that jobs are not
    plentiful as in other non-reservation areas. Under the current language
    of the Act, states can place time limits on how long a family receives
    TANF benefits. The time limit however, cannot exceed 60 months or 5
    years. No more than 20 percent of a state's caseload can be exempted
    from the time limit for hardship reasons. Although proposed technical
    amendments under H.R. 1048 are intended to lift the ceiling on the
    1,000 population limit, the unemployment source data that would be
    acceptable is not defined in the Act itself. Additionally, Oklahoma
    tribal jurisdictions are not considered reservations per se, and do not
    meet the requirement as set forth in the Act. Congress must uphold its
    trust responsibility and provide sufficient financial resources to
    assist Tribes in developing viable economic opportunities and
    infrastructure needs to support employment prospects in Indian country.
    Without full cooperation between Congress, States and Tribal
    governments, Welfare Reform in Indian country will become a dismal
    failure. Tribes do not have sufficient financial resources to support
    the intent of the Act.
        Provide direct funding to Tribal courts and law enforcement
    officers to enforce juvenile provisions under the Act in Indian
    country. The Personal Responsibility and Work Opportunity
    Reconciliation Act provides for Tribes to establish child care
    standards, determine paternity, develop child support enforcement
    requirements, and work with States to pursue and collect child support
    for children. However, the infrastructure needs, development of
    standards and essential Tribal law enforcement authority has not been
    provided for under the Act to fulfill this obligation. Tribal courts
    will require additional personnel to oversee child support hearings on
    orders, to coordinate with State agencies on the same, to develop child
    care standards and ordinances, and to staff their law enforcement
    departments to pursue negligent parents within and across Indian
    Country borders. Appropriations are needed to increase the budgets of
    Tribal courts and law enforcement departments throughout Indian
    Country. Additionally, such funding should be provided directly to a
    Tribe.
        In conclusion, I urge this Committee as well as all other
    authorizing Committees to give careful consideration to the
    appropriation needs of Indian Tribes for the implementation of the
    Personal Responsibility and Work Opportunity Reconciliation Act. As
    Congress continues to work out the problems States have encountered in
    implementing Welfare Reform, i.e., restoring benefits to adult food
    stamp households, extending benefits to legal aliens, etc., we ask that
    you do not forget to correct the grave oversight on the part of Indian
    Country's needs.
        The Sac and Fox Nation appreciates this opportunity to present our
    concerns to the Committee regarding the fiscal year 1998 appropriations
    needed for us to implement the Personal Responsibility and Work
    Opportunity Reconciliation Act. I am available to the Committee to
    respond to any additional questions or comments you may have regarding
    our testimony.
        Thank you.
                                     ______

                         National Institutes of Health

         Prepared Statement of American Federation for Medical Research
        The American Federation for Medical Research (AFMR) appreciates the
    opportunity to present our views about the challenges confronting our
    nation's clinical research effort. The AFMR is a national organization
    of 7,000 physician scientists--primarily medical school faculty
    members--engaged in basic, clinical, and health services research.
        The AFMR is most grateful for this Subcommittee's strong support
    for the National Institutes of Health. We also applaud your acceptance
    of the NIH proposal for additional funds to construct a new clinical
    research center on the NIH campus. However, we are concerned that
    increased appropriations have not been provided for much needed
    initiatives to strengthen clinical research in the extramural
    community. Legislation will be introduced this year in both the House
    and Senate to address this issue. Unfortunately, while we await
    enactment of this legislation, American clinical research continues its
    decline. The AFMR urges this Subcommittee to move forward this year and
    propose additional NIH funding to revitalize our nation's clinical
    research effort.
    The Problems Confronting Clinical Research
        First, what is clinical research? A definition of clinical research
    could extend from fundamental experiments of nature using human
    subjects or tissues, to clinical trials, to technology assessment, to
    health services research. This testimony will focus on the area of
    clinical research that should be of particular concern to the NIH: the
    earliest stage of clinical research through which a basic science
    discovery is applied to the study of human physiology, to research on a
    disease or condition, or to the initial study of a potential
    therapeutic intervention. This phase of clinical research, sometimes
    referred to as ``translational'' or ``integrative'' research, is the
    pathway that links basic science to human health. Basic science and
    clinical research are mutually dependent: basic science discoveries are
    the foundation of clinical research, but without clinical research,
    basic science offers little to mankind. Accordingly, threats to
    clinical research jeopardize our ability to reap the rewards of the NIH
    investment in basic science.
        Should NIH play a role in supporting clinical research? Absolutely.
    There is significant industry support for clinical research and
    clinical trials aimed at the development of new products. However, for
    clinical research that may not offer a product ``pay off,'' funding is
    extremely limited. For early-stage translational research that may have
    little or no commercial product potential, NIH funding is critically
    important. Examples of such research include: small-scale human studies
    of techniques or compounds that have shown promise in animals; research
    on nutrition, prevention, transplantation, or behavioral interventions;
    investigator-initiated studies to test clinical hypotheses, such as the
    research that identified a bacterial cause for peptic ulcer disease;
    and small-scale studies of off-label uses of approved drugs, such as
    research on the use of Ibuprofen for Cystic Fibrosis patients.
        Because there is literally no industry interest in this type of
    research, it requires investment by NIH. In addition, of course, NIH
    funding is critically important for the training and career development
    of clinical investigators.
        The difficulties confronting clinical researchers and their
    patients have received much attention but little action over recent
    decades. In 1979, former NIH Director James Wyngaarden gave his seminal
    presentation characterizing the clinical investigator as an
    ``endangered species.'' In September of 1994, the Institute of Medicine
    of the National Academy of Sciences published a report on the
    opportunities and challenges confronting clinical research. The IOM
    recommendations are the foundation of the clinical research legislation
    to be introduced shortly. In late 1995, the journal Nature Medicine
    published a report documenting a slowing of medical discovery in the
    United States over the last several decades.
        Specific challenges to clinical research include the following:
      --First is the issue of tuition debt. A low-paying research
            fellowship is not an option for the indebted medical school
            graduate. The average debt of the 1981 medical school graduate
            was $20,000. By the mid-1990s, that amount has tripled to
            $63,000. A research fellowship paying $28-30 thousand is a
            financial impossibility for most individuals with such high
            tuition debt.
      --Second, young physicians are further alienated from careers in
            research when they see their mentors struggling or abandoning
            their research careers. The AMA reports that between 1985 and
            1993, the number of physicians reporting research as a major
            professional activity fell from 23,268 to 14,716--this
            occurring while the total number of physicians grew
            dramatically. This poses problems for the NIH extramural
            program as well. In 1970, physicians made up 43 percent of all
            principal investigators on funded grants. By 1987, this had
            dropped to 30 percent. Applications for NIH grants have grown
            dramatically in the past fifteen years, but most of the growth
            has been among PhDs. Without a dramatic increase in the overall
            success rate for NIH grant applications, there has been an
            inevitable squeeze on the physician investigator.
      --The third problem: NIH peer review. A special outside committee of
            the Division of Research Grants concluded that clinical
            research proposals are inadequately reviewed by study sections
            that evaluate only a minimal number of clinical research
            grants. In other words, in many study sections, physician
            scientists have a greater chance of securing NIH funding with
            basic science studies than clinical proposals. Accordingly,
            most physicians applying for NIH funds confine themselves to
            the same scientific questions and projects being pursued by
            PhDs instead of bringing their clinical expertise and
            understanding of the human body and disease to the translation
            of basic science from the bench to the patient's bedside.
      --A fourth problem confronting clinical research is the severe
            financial pressure on the academic medical centers. Competition
            in the health care marketplace has forced academic institutions
            to: demand that physician faculty spend more time generating
            revenue from patient care activities, diverting them from
            research projects; and eliminate the ``profit margin,'' if you
            will, from clinical services that was used in the past to
            subsidize clinical research and clinical research training.
        Five years ago, one could walk into a teaching hospital patient
    ward and find substantial numbers of research patients mixed in with
    those receiving non-investigational treatment. Today's wards lack the
    additional resources and staff necessary for complicated clinical
    research protocols. Researchers and their patients seek safe haven from
    health care competition in the General Clinical Research Centers
    (GCRCs), which are underfunded for the task. In fact, to our distress,
    the fiscal year 1998 President's request for the GCRCs would hold them
    to a subinflationary increase of less than 1--percent effectively, a
    programmatic cut.
    The Implications of the Clinical Research Crisis
        What is the impact of a weakened clinical research effort? Why
    should this Subcommittee provide additional funding to address the
    problems confronting clinical research?
      --First, improvements in patient care and the prevention of disease
            depend on clinical research that brings basic scientific
            discoveries to the benefit of human beings. Any obstacles to
            clinical research slow progress in medicine. Patients out there
            waiting for ``the cure'' must wait longer, and the NIH
            investment in basic science can not pay off.
      --Second, the fruits of clinical research are often taken by industry
            and developed into new drugs, vaccines, or health care
            products. These new products boost our economy and create jobs.
      --Third, while not all medical discoveries reduce health care costs,
            many do, as documented in NIH reports on the cost-savings
            resulting from new therapies. Certainly, it is less expensive
            to vaccinate against polio and hepatitis then it is to treat
            these diseases and the chronic disability resulting from them.
      --Finally, the international implications of allowing clinical
            research to falter are enormous. We are beginning to see signs
            that other nations are picking up the clinical research banner
            that America is dropping. The discovery of the cure for peptic
            ulcer disease--one of the greatest medical scientific
            breakthroughs since the polio vaccine--was made in Australia.
    Solutions to the Problems Confronting Clinical Research
        The AFMR believes that this Subcommittee must take action to
    provide additional funding for extramural clinical research just as it
    has wisely invested in a new clinical research center on the NIH
    campus. First, the Subcommittee should take steps to increase
    substantially funding for the NIH-sponsored General Clinical Research
    Centers across the country. As noted above, these ``safe havens'' for
    clinical research are vitally important. Funding for the GCRCs has not
    kept pace with NIH-wide budget growth in recent years. For fiscal year
    1998, the AFMR recommends an increase of $20.5 million (17 percent) for
    the GCRCs. Of this increase: $13 million would partially bridge the
    average 25 percent cut below Advisory Council approved budgets for the
    GCRCs; $5 million would fund three additional centers; $2 million would
    expand the Clinical Associate Physician and Minority Clinical Associate
    Physician training programs in the GCRCs; and $500,000 would expand the
    GCRC clinical scholars program.
        Second, we recommend that the Subcommittee provide an additional
    $59.5 million--a mere half of a percent of the NIH budget--to fund the
    initiatives to be proposed in the clinical research legislation. This
    would include: $1 million to expand the existing NIH loan repayment
    program for intramural scientists to the extramural community; $3
    million for the creation of a 5-year career development award for
    clinical researchers; $52.5 million to establish an ``innovative
    medical science awards'' program; and $3 million to create a grant
    program for Masters and Ph.D. degree training in clinical
    investigation.
        We recognize and applaud this Subcommittee's resistance to
    ``disease of the month'' earmarking for the NIH budget. As you consider
    our proposal for specified additional funding for clinical research
    initiatives, please keep in mind that such funds would not be directed
    to particular diseases or investigators. These funds would go to peer
    reviewed proposals to translate basic scientific discovery to the study
    of any disease. Rather than special interest set-asides, these
    initiatives are more comparable to the Subcommittee's directives to
    fund the extramural facilities construction program and the new
    clinical research center on the NIH campus. They will advance the goals
    of the NIH as a whole, will benefit all NIH Institutes and Centers, and
    will boost existing NIH efforts focussed on women's health, minority
    health, and prevention.
        In closing, the AFMR would suggest that if this Subcommittee fails
    to fund NIH initiatives to address the clinical research crisis, we
    will continue to see a slowing of medical discovery. You will continue
    to hear exciting reports of the identification of specific disease
    genes or the discovery of molecular mechanisms of disease but will
    wonder why these findings do not result in cures or vaccines. If this
    Subcommittee fails to act in 1997, by the year 2000 you will be
    directing the NIH to implement a crash program to replenish the
    nation's corps of clinical investigators only to be told that such an
    effort will take 10-12 years. Disease research breakthroughs will
    occur, but an increasing number will come from other countries that are
    applying the fruits of NIH-sponsored basic research to the development
    of new therapies. Please do not delay further. Construction of the new
    clinical research center in Bethesda has begun. Please move forward
    this year with funding to rebuild the extramural clinical research
    capacity of the NIH.
                                     ______

     Prepared Statement of Peter E. Schwartz, M.D., President, Society of
                            Gynecologic Oncologists
                                i. introduction
        Chairman Specter, Senator Harkin, other Members of the
    Subcommittee, I am Peter E. Schwartz, M.D. I am here today in my
    capacity as President of the Society of Gynecologic Oncologists (SGO).
    The SGO is the only national medical specialty devoted to the study and
    treatment of female reproductive organ cancers. These malignancies
    include cancers of the cervix, uterus, and ovary. The SGO has more than
    750 members who specialize in providing comprehensive care for women
    with gynecologic cancers, including prevention, diagnosis, surgery, and
    all subsequent therapy required during the course of her disease. To
    qualify as a member, physicians must complete a four year obstetrics
    and gynecology residency, complete a 3- or 4-year fellowship in
    gynecologic oncology, and pass the written and oral examinations for a
    Certificate of Special Competence in Gynecologic Oncology and Board
    certification in Obstetrics and Gynecology. The SGO maintains strict
    educational requirements to ensure that women with cancer receive the
    best and most up-to-date, ``state-of-the-art'' care.
        I am extremely grateful for the opportunity to provide public
    witness testimony on behalf of the SGO in support of increased funding
    for the National Institutes of Health, and particularly the National
    Cancer Institute, which provides the majority of the funding for
    gynecologic cancer research
                      the incidence of gynecologic cancers
        There are three main gynecologic cancers: (1) Cervical; (2)
    Uterine; and (3) Ovarian. The incidence of each these cancers and the
    women developing these diseases are different, reflecting the unique
    biologic characteristics of these diseases.
        Cervical cancer.--Both the incidence and mortality for invasive
    cervical cancer have declined steadily in this country over the last
    three decades. Although only 14,500 women will develop cervical cancer
    in 1997, one-third of them will die from this preventable disease.
    African-American women continue to experience an incidence rate that is
    nearly two times higher than the incidence rate for white women, and
    African-American women have a 56-percent 5-year-survival rate as
    compared with a 70-percent survival rate for white women.
        Higher rates of cervical cancer are found in the American South as
    compared to other parts of the U.S. This reflects the tendency of the
    disease to disproportionately affect women in rural areas and women in
    lower socioeconomic classes. Cancer of the cervix is a preventable
    disease if women are regularly screened using the Pap Smear.
        Women with invasive cervical cancer are most often over the age of
    50, while women with carcinoma in situ, a precancerous condition, are
    most often between the ages of 25 to 34 years old. However, there has
    recently been an increase in the incidence of cervical cancer among
    young white women in the U.S.
        Uterine cancer.--Cancer of the uterine corpus or endometrium is the
    fourth most common cancer among U.S. women and is the most common
    invasive gynecologic cancer. An estimated 34,900 women will be
    diagnosed with uterine cancer in 1997. Fortunately, this cancer causes
    a limited number of deaths, as evidenced by a 5-year survival rate of
    83 percent.
        Uterine or endometrial cancer is uncommon before the age of 45, but
    the risk of being diagnosed with endometrial cancer rises sharply among
    women in their late 40's to mid 60's. Endometrial cancer rates are
    highest in North America and northern Europe. In the U.S., incidence
    rates for white women are nearly twice as high as the incidence rates
    for black women. Also, a number of clinical trials have recently
    indicated an increased risk of endometrial cancer among tamoxifen
    treated breast cancer patients.
        Ovarian cancer.--In 1997, the American Cancer Society estimates
    26,800 new cases of ovarian cancer will be diagnosed in this country
    and 14,100 women will die from ovarian cancer this year. The 1987-91
    age-adjusted incidence was 14.8 cases per 100,000 women; the incidence
    increases with age until age 75 when the rate declines.
        A relative survival rate of 90 percent can be achieved if ovarian
    cancer is diagnosed early, but unfortunately, 70 percent of women with
    ovarian cancer are not detected until the cancer has reached an
    advanced stage, which has an 80 percent fatality rate. Ovarian cancer
    ranks fourth as a cause of death among cancers in females. White women
    in the U.S. are twice as likely as black women to be diagnosed with
    ovarian cancer. The risk of a women developing ovarian cancer is three
    to five times greater, if her mother or her sisters had or have ovarian
    cancer. Women who have been diagnosed with breast cancer are 70 percent
    more likely to develop ovarian cancer, than the general population.
    examples of current clinical research into the causes of and cures for
                              gynecologic cancers
        In the area of cervical cancer research, the Food and Drug
    Administration has recently approved the use of a Lipopeptide vaccine
    for investigation at the NCI. This clinical initiative targets the
    Human Papilloma Virus (HPV), which has been associated with over 90
    percent of cervical cancers. The development of a therapeutic vaccine
    to treat advanced cervical cancer represents a novel and attractive
    alternative to current therapies. This will be a phase I protocol
    clinical trial that is open to patients with recurrent or refractory
    cervical cancer who have an expected survival of at least three months.
    Also underway is the development of a prophylactic HPV vaccine with the
    potential to prevent the transmission of the HPV virus, and thus
    prevent cervical cancer.
        Recently, in the area of ovarian cancer, protocol 111 of the
    Gynecologic Oncology Group, one of the NCI Cooperative Groups,
    demonstrated a 50-percent increase in median survival time among women
    with advanced ovarian cancer who were treated with the combination of
    paclitaxel and cisplatin compared with the standard approach of
    cisplatin with cyclophosphamide. This helped to confirm that paclitaxel
    has important anti-tumor activity in patients with ovarian and breast
    cancer.
        areas for emphasis: priorities to succeed in gynecologic cancer
                                    research
        The SGO is very supportive of a doubling of the NIH budget over the
    next five years, as called for in Senate Resolution 15 and House
    Resolution 83. As a way to begin to achieve this goal, the SGO would
    ask that this Subcommittee approve an increase of at least 9 percent
    for the NIH and that this increase be uniformly distributed to each
    Institute in an equitable manner, thus the NCI would receive an
    increase of 9 percent as well.
        We would like to share with the Subcommittee some areas that need
    attention and hold great scientific promise, if appropriate funding and
    research efforts are directed towards these issues.
    i. gynecologic oncologists as primary investigators in independent labs
                               on the nci campus
        The issue of gynecologic oncologists as principal investigators in
    the intramural program is quite timely, with the building of the new
    clinical center and the emphasis on research during the fellowship
    training of a gynecologic oncologist. The SGO advocates a greater
    physical presence of gynecologic oncologists at the NIH and
    particularly at the NCI. The multi discipline training received by
    gynecologic oncologists during their fellowship programs facilitates
    the optimal delivery of care to women with gynecologic cancer.
    Increasing the number of principal investigators should increase the
    enrollment in screening and treatment trials in gynecologic cancer at
    the NIH clinical center. There is currently only one fully trained and
    board eligible gynecologic oncologist with an independent lab on the
    NCI campus.
        The SGO would urge this Subcommittee to work with Dr. Klausner, as
    we are, to ensure that at a minimum, three independent labs are
    established and supported in the new clinical center, where the primary
    investigators are fully trained gynecologic oncologists.
    ii. increased emphasis on early detection of and prevention of ovarian
                                     cancer
        As already noted in my remarks, there is quite a difference in the
    survival rates of women who are diagnosed with cervical cancer and
    women who are diagnosed with ovarian cancer. The reason for this is
    that we have a very good method for diagnosing cervical cancer, the Pap
    Smear. We do not have a test such as this for the detection of ovarian
    cancer. Today, we have ultrasound and CA 125 as the methods for
    detection of ovarian cancer. Unfortunately, more than 66 percent of the
    ovarian cancer in this country is diagnosed in the operating room,
    after the cancer has spread to other internal organs.
        Currently, there is the clinical PLCO study, which is being
    supported by the NIH, that is testing the effectiveness of CA 125 and
    sonogram for ovarian cancer screening. However, given the difference in
    survival rates for women whose ovarian cancer is detected and then
    diagnosed early and for those women who are diagnosed with advanced
    ovarian cancer, the SGO is advocating that additional federal resources
    be directed towards increasing clinical trials for ovarian cancer
    prevention and detection.
     iii. a specialized program of research excellence (spore) for ovarian
                                     cancer
        Last year the full Appropriations Committee encouraged the NCI to
    providing funding for a SPORE that was targeted at ovarian cancer
    research. A SPORE is a competitive grant mechanism to conduct
    translational research, where cancer centers are the applicants.
    SPORE's, with the exception that they are for translational research
    only, are similar to investigator initiated program project grants,
    commonly known as PO1's. Currently, there is a PO1 grant for ovarian
    cancer research at Memorial Sloan-Kettering Cancer Center.
        The SGO would like to thank the Committee for its efforts in this
    area. Unfortunately, we have yet to see a request for application (RFA)
    be announced for a SPORE specifically for ovarian cancer, but we hope
    that after the cancer center evaluations are finished and released,
    this will occur. The SGO has heard from our members, who are at cancer
    centers, that the SPORE, as a grant mechanism, works well for increased
    coordination within the cancer center. We ask that this Subcommittee
    continue to monitor this situation until a SPORE, targeted for ovarian
    cancer, is funded by the NCI.
                   iv. the need to train more gyn scientists
        The SGO would like to suggest to the Subcommittee that they
    consider directing the NIH Office on Women's Health to take on a
    greater role in encouraging research directed at cancers of the
    reproductive system. One way to do this is to have the Office on
    Women's Health dedicate a small portion of their fiscal year 1998
    budget, to administer a young investigator program in gynecologic
    oncology research. This could be done in collaboration with the NCI.
    Numerous grant mechanisms, like the RO3's, and the Clinical Associate
    Physician (CAP) program, already exist for the Office on Women's Health
    to use as a model. Applicants to this program would have as their goal
    to become independent clinical investigators in gynecologic oncology
    research.
        The SGO, through its foundation, the Gynecologic Cancer Foundation,
    has already partnered with the NCI to provide funding for one young
    investigator. In the next few months, the SGO will be engaged in
    discussions with the NCI on how to expand this program, as well.
                          conclusion: a success story
        Chairman Specter, Senator Harkin, and Members of this Subcommittee,
    I greatly appreciate your time and attention to the need for additional
    resources for research being conducted to find the causes and
    subsequently the cures for ovarian cancer. I would like to close today
    with a success story. I would like to share with you the story of the
    first patient I treated at Yale University Medical Center with
    chemotherapy, a success that happened because of past research in the
    area of gynecologic cancer.
        Peggy was 18 years old when diagnosed with a pelvic mass, thought
    to be a twisted ovarian cyst. She had surgery, where a big, ugly tumor
    was removed. A frozen section was done and an endodermal sinus tumor, a
    rare ovarian cancer, was diagnosed. The prognosis was grim. In 1975, 50
    percent of the women diagnosed with this cancer were dead within 6
    months, and almost all of the rest died within 1 year. I went to the
    head of my division, as I had just come to Yale, having completed my
    gynecologic oncology fellowship at M.D. Anderson in Houston, TX, to
    discuss her treatment. At that time, radiation was the treatment of
    choice. I wanted to try an experimental chemotherapy program, that had
    recently been successful at the M.D. Anderson Cancer Center in the
    treatment of a few similar patients. Peggy was treated with 18 months
    of that chemotherapy. She was then re-operated and no evidence of
    cancer was found. Peggy went on to become the mother of two healthy
    children and remains alive and well today, 22 years following her
    original diagnosis.
        This patient was the first of well over 100 women treated at our
    medical center with these rare cancers who are alive today, with 66
    percent having had their fertility preserved, because of successful
    medical research. It is this sort of outcome that drives my colleagues
    and me to seek new ways to prevent, to diagnosis, and to treat women at
    risk for, or who have gynecologic cancers.
        I and the SGO look forward to working with each of you in the years
    ahead on behalf of the women of this country and their reproductive
    health. I would be happy to answer your questions, at this time.
                                     ______

      Prepared Statement of Frances M. Visco, President, National Breast
                                Cancer Coalition
        Thank you, Mr. Chairman and members of the Committee for all your
    previous hard work and leadership in working together with the National
    Breast Cancer Coalition to create support for the battle to eradicate
    breast cancer. I am Fran Visco, President of the National Breast Cancer
    Coalition and a wife, mother, lawyer and a breast cancer survivor.
        As you know, breast cancer is the most common form of cancer in
    women; every three minutes another woman is diagnosed and every 11
    minutes another woman dies of breast cancer. We still do not know the
    cause or have a cure for this dread disease.
        As a result, the National Breast Cancer Coalition, a grassroots
    advocacy effort dedicated to the eradication of breast cancer, was
    conceived in January 1991. The Coalition now numbers over 400 member
    organizations, and more than 40,000 individual women, their families
    and friends.
        Breast cancer costs this country untold dollars in medical costs,
    lost resources, lost productivity, and in lost lives. The war against
    breast cancer, the search for answers to what causes the disease, how
    we can prevent it, how we can cure it--these are immense issues,
    requiring a concerted, coordinated effort on the national level.
    Spending money now on biomedical research is fiscally responsible. We
    are investing in a healthful, more productive future.
        Mr. Chairman, you and your Committee are certainly aware of the
    need for increased breast cancer research funding as a result of your
    hearing in February, on mammography screening guidelines. During the
    hearing, Mr. Chairman, you demonstrated your commitment to our fight by
    asking me how much money is needed for breast cancer research. I have
    thought about it in-depth and realize that to meet the NBCC goal of
    $2.6 billion for breast cancer research between now and the year 2000
    to create real progress in the battle against breast cancer, $590
    million must be appropriated to NIH this year. The immediate need for
    increased resources for breast cancer research could not be better
    illustrated than by the recent mammography debate. The data available
    on breast cancer is not enough for the scientific community to even
    come to a consensus on how to best detect this disease, let alone to
    prevent it or cure it. We desperately need more answers about this
    disease.
        Therefore, it is important to send a clear message to both NIH and
    NCI, about our high level of commitment to eradicating breast cancer.
    The National Breast Cancer Coalition is calling on Congress to
    appropriate $590 million to NIH for peer-reviewed breast cancer
    research in fiscal year 1998 and we strongly support Senator Snowe's
    bill, S.67 (Breast Cancer Research Extension Act of 1997) which
    authorizes the appropriation of $590 million for breast cancer research
    for NIH in fiscal year 1998. It is essential to ensure that NCI makes
    breast cancer research a top priority and that the increased resources
    appropriated to NIH are used for peer-reviewed breast cancer research.
        In the six short years that the National Breast Cancer Coalition
    has been in existence, crucial strides have been made. In 1991, less
    than $100 million dollars was spent on breast cancer research; a
    disease that afflicted 180,0000 women per year. But thanks to the work
    of the Coalition and your leadership, in fiscal year 1997, the NIH
    appropriation received a 6.9 percent increase, which should result in
    approximately $430 million for breast cancer research. These increases
    have already had a positive impact on the challenge to eradicate this
    dread disease.
        The increased funding for breast cancer research has revitalized
    the scientific community. There is a level of excitement, an energy,
    among scientists that had been lacking for some time. Scientists,
    consumers and policy-makers have come together around this issue and
    have forged a new partnership that can only bring us to our goal that
    much faster.
        Young scientists are choosing the field of breast cancer research
    for their careers, and experienced, prestigious scientists have shifted
    their focus and are now engaged in the challenge to find the cause and
    ultimately the cure. The breast cancer gene, BRCA1, was identified in
    1994--a major breakthrough for breast cancer research. And even though
    the discovery has raised as many questions as it has answered, this
    progress begins to chip away at the fundamental questions about breast
    cancer that are so essential to unraveling the mysteries of this
    killer. In addition, over the past few years, there have been
    incredible discoveries at a very rapid rate that offer fascinating
    insights into the biology of breast cancer, including discoveries about
    the basic mechanisms of cancer cells. These discoveries have brought
    into sharp focus the areas of research that hold promise and will build
    on the knowledge and investment we have made.
        However, we still have a long way to go. As you know, this disease
    is complex and there is much work to be done before our goal can be
    achieved. The research simply needs to continue so that answers to the
    questions around breast cancer can be found. The women who are living
    with this disease and those who live in fear of this disease, deserve
    information they can depend on and answers that come one step closer to
    saving their lives. If the funding levels for breast cancer research
    are not increased, the forward progress we have begun to make in these
    past years will be lost.
        I cannot emphasize enough the importance of biomedical research in
    our fight. The National Cancer Institute has the infrastructure, and
    unparalleled expertise in pursuing and funding the basic and clinical
    research that continues to be essential in the quest to find the
    answers to the mystery of breast and all cancers. Our federal
    government must not waiver in its commitment to such high quality
    research with the potential to save billions of dollars and millions of
    lives.
        Now is the ideal time to make a significant commitment to
    eradicating breast cancer by substantially increasing breast cancer
    research funding. The one consensus about breast cancer in the medical,
    advocacy, policy and political communities is that more data is needed.
    Following the leadership of this Committee, many other Congressional
    Members have begun to introduce various legislation this year toward
    the fight against breast cancer. The interest and commitment to
    eradicating breast cancer is more apparent this year than ever before--
    making this year the best time to create real progress in the breast
    cancer battle and propel research forward with a significant increase
    in the amount of money appropriated to NIH for peer-reviewed breast
    cancer research.
        The progress that has been made in the past six years has been a
    result of your Committee's previous leadership, as well as the
    dedicated hard work of the members of the National Breast Cancer
    Coalition. In the past six years, thousands upon thousands of breast
    cancer survivors, their families and friends have worked tirelessly to
    advance the cause of eradicating breast cancer.
        Our members are continuing to work towards our goal of the
    eradication of breast cancer. In May of 1996, the NBCC launched its
    third petition drive, Campaign 2.6. The goal was to collect 2.6 million
    signatures on petitions calling on the President and the U.S. Congress
    to spend 2.6 billion on breast cancer research between now and the year
    2000. On May 6, we will present a petition which has gained over 2.6
    million signatures for $2.6 billion for breast cancer research by the
    year 2000, to the Congressional leaders on the steps of the Capitol.
    Women and their families across the country have worked hard to gain
    these signatures. Funding for peer-reviewed breast cancer research at
    the NIH is an essential component of reaching the $2.6 billion goal
    that so many women and families have worked to gain.
        We realize, however, that while increased funding is a critical
    element to finding the cause and cure for breast cancer, funding alone
    is not enough. That is why we have worked to create a national
    strategy. Toward this end, in 1993, the Coalition presented a petition
    to President Clinton with 2.6 million signatures. The Petition
    requested that he move to develop a national plan of action to achieve
    the goal of the eradication of breast cancer. In response, a summit was
    convened in December 1993, at the National Institutes of Health. It was
    a historic gathering of over 150 scientists, leaders from the corporate
    world, consumer activists, and public policy-makers. The scientists and
    consumers work together in a unique and unprecedented partnership. I
    co-chair the continuing National Action Plan on Breast Cancer and am
    intimately involved in its thoughtful and thorough implementation.
        We have also worked extensively with Congress. As you know, we have
    deluged Congress with letters, telegrams, phone calls and visits. Once
    again, we are prepared to bring our message to Congress. In early May,
    many of the women and family members who supported the campaign to gain
    the 2.6 million signatures will be at our Annual Advocacy Training
    Conference in Washington, D.C. We expect 600--700 breast cancer
    activists from around the country to join us in continuing to mobilize
    behind the efforts to eradicate breast cancer. The overwhelming
    interest and dedication to eradicate this disease continues to be
    evident as people are not only signing petitions, but are willing to
    come all the way to Washington, D.C. to deliver their message about the
    importance of our commitment.
        Largely because of the work of the National Breast Cancer
    Coalition, there has been a revolution in the way breast cancer
    research is pursued. Unprecedented partnerships have been forged
    between scientists and consumers, activists and corporate leaders. As a
    result, the research has the benefit of the wisdom of each of these
    important perspectives, ensuring the value of investment in breast
    cancer research and ultimately the success of its endeavor: to make
    breast cancer a thing of the past.
        I truly believe that breast cancer research remains an important
    responsibility of the federal government. In the last five years,
    breast cancer advocates and the 2.6 million American women with breast
    cancer have been heartened by our government's response to their cries
    for the long needed increase in breast cancer research funding, and
    thanks to that investment, real progress is being made.
        We ask this Committee to do whatever it can to find the funds to
    continue to make breast cancer research a priority and appropriate $590
    million for peer-reviewed breast cancer research at NIH. The 2.6
    million women who now have breast cancer deserve no less. Thank you for
    your consideration and we look forward to continuing to work with you
    in the future.
                                     ______

    Prepared Statement of Robert G. Luke, M.D., President, American Society
                                 of Nephrology
                                  introduction
        Chairman Specter, Mr. Harkin, and other Members of the
    Subcommittee-my name is Robert G. Luke, M.D., and I am the President of
    the American Society of Nephrology (ASN), the national organization
    representing physicians and researchers who are committed to finding
    cures for kidney disease. I am also one of the ASN representatives to
    the Council of American Kidney Societies (CAKS). CAKS was founded in
    1996 to serve as a representative body of scientific and professional
    nephrology practice organizations engaged in the promotion, support,
    and influence of the policies that affect the broad field of kidney
    diseases. I am extremely grateful for the opportunity to provide public
    witness testimony on behalf of ASN's 6,500 members and CAKS in support
    of the National Institutes of Health and particularly the National
    Institute of Diabetes, Digestive, and Kidney Diseases, which provides
    funding for most of the kidney disease research in the United States.
                 the incidence and prevalence of kidney disease
        The number of patients in this country with end stage renal
    disease, that is total kidney failure, now exceeds 300,000, and this
    number was increasing by about 10 percent every year. However, recent
    trends show that the rate may have decreased to 7-8 percent. In the
    next few months, this new rate will be validated. If it is determined
    that the rate has actually decreased, it will be because of NIDDK
    sponsored research.
        The incidence rate of 210 patients with end stage renal disease
    (ESRD) per million population in the United States is the highest in
    the world. In your state alone, Mr. Specter, the number of people
    undergoing therapy for ESRD has increased from 4,988 as of December 31,
    1984 to 10,749 as of December 31, 1993, or over 115 percent. In your
    state, Mr. Harkin, the number of patients undergoing treatment for end
    stage renal disease increased from 927 to 2,055 during the same time
    period, an increase of over 121 percent. Attached to my statement are
    tables that show for each state the dramatic rate of increase of people
    receiving therapy for end stage renal disease.
        The highest percentage, 37.4 percent, of ESRD patients covered by
    Medicare are between the ages of 45-64 years old. The next largest
    group at 28.5 percent, is between the ages of 20-44 years old. ESRD is
    four times more likely in African Americans than in whites, and
    approximately 54 percent of those living with ESRD are male.
        As I will discuss more fully in another section of my statement,
    the possibility of early death for those with end stage renal disease
    is with us every day. I am saddened to share with this Committee that
    since the ASN was here last year, Dr. Elziena Dawson from Chicago, who
    accompanied Dr. Bill Couser for last year's testimony and who was with
    us in Chicago when we presented Mr. Porter with our ASN Congressional
    Award, died earlier this year from post-operative complications
    following a kidney transplant. Dr. Dawson is one of 40,000 Americans
    who will die from kidney failure or its complications this year.
                                what causes esrd
        The main causes of ESRD are diabetes (27 percent), hypertension (24
    percent), glomerulonephritis (18 percent), and polycystic kidney
    disease (5 percent). Hypertension and diabetes affect minorities
    disproportionately, accounting for the higher incidence of ESRD in the
    minority population. Diabetes is the most common cause of kidney
    failure in Native Americans, and it leads to kidney failure more often
    in women than in men.
                       direct costs of esrd to the nation
        As the committee is well aware, over 90 percent of patients with
    ESRD and patients receiving kidney transplants are covered by Medicare,
    and kidney disease represents the single largest disease expenditure in
    the Medicare program. Over a four year period, 1991 through 1994,
    Medicare paid $25.57 billion in claims for ESRD patients. And in just
    one year, 1994, the total estimated direct medical payments for ESRD by
    public and private sources was $11.13 billion.
        If we were to assume that the cost to the Medicare program for
    covering the health care services needed by patients with ESRD
    increases at a rate of 5 percent a year, then the cost to the Medicare
    program in 1997 would be approximately $9.63 billion to cover dialysis
    and transplantation patients. This increase in cost would occur despite
    the fact that payments for dialysis treatments in constant dollars have
    actually decreased since 1972, a truly remarkable example of federal
    cost containment.
        The total funding at NIH for kidney disease research will be
    approximately $202.6 million this year or just a little more than 2
    percent of this country's direct cost to treat ESRD. The majority of
    this funding is at NIDDK, where the fiscal year 1997 appropriation is
    $127.1 million. This is a very small percentage, yet it is my view and
    the view of the members of the American Society of Nephrology that an
    investment in research is the only real opportunity we have to reduce
    the enormous Medicare costs and human suffering imposed by ESRD.
                what are the effects of esrd on quality of life
         Medical research, made possible largely through Congressional
    support, has given the men, women, and children who suffer from chronic
    renal failure hope. Thirty-five years ago, ESRD patients died. Dialysis
    technology was in its infancy, available only for patients with acute
    rather than total renal failure. Kidney transplants were only a dream.
        Since then, millions of Americans, have benefitted from dialysis or
    kidney transplants. However, while treatment often prolongs life, ESRD
    remains a serious medical condition. There is a misconception that the
    dialysis patient is able to live a full, active life. Sadly, that is
    not the case. Dialysis does not simply mean being hooked up to a
    machine three hours a day, three times a week. Dialysis patients
    commonly suffer bouts of anemia, nausea, fatigue, low blood pressure,
    chills, and itching (due to impurities in the blood). The body has
    difficulty adjusting to the frequent changes in toxicity levels, as
    toxins are removed and then build back up prior to the next dialysis.
    Many patients suffer depression, due to feelings of vulnerability and
    illness.
        Children with chronic renal diseases present medical challenges not
    usually seen in adults. Children undergo continued somatic, mental and
    psychological maturation even in the face of ESRD. Therefore, an
    understanding of how these issues of normal development interact with
    chronic renal disease in the production of abnormal growth and
    development is the highest priority. This may be examined in the
    mechanism of disease progression, including identification of early
    markers of diabetic nephropathy in the child and the adolescent.
        Despite the progress we have made and the possibilities on the
    horizon, the mortality rate for ESRD patients is still very high.
    Approximately 50 percent of dialysis patients die within a few years
    after they begin treatment. The life expectancy of a 49 year old ESRD
    patient is less than seven years, compared to 30 years for a healthy 49
    year old American.
            what can research offer to patients with kidney disease
        Nephrology research is addressing many issues that affect patients
    with kidney disease. We are defining the best dialysis regimens in
    patients with ESRD. In experimental animals, we are exploring
    treatments to prevent or shorten the course of acute renal failure. We
    have recently cloned the gene responsible for polycystic kidney disease
    and are now studying the protein to determine how it causes this
    disease. Hopefully, this discovery will lead to new treatments or
    preventions for this disease.
        Research is also addressing the mechanisms by which
    glomerulonephritis is induced, with the hope that this will lead to
    strategies for prevention. A good example of this is the ANCA test,
    which is now available to help in the diagnosis of vasculitis.
        Basic animal research led to clinical studies that have now
    established that the progression of chronic renal disease can be
    substantially slowed by: treatment of blood pressure to normal levels;
    use of specific types of anti-hypertensive drugs, that have kidney-
    protecting effects in addition to their action to lower blood pressure;
    and dietary protein restriction. These approaches may well be
    responsible for the recently noted slowing in the rate of growth of
    ESRD in the U.S.
        Fifteen years of NIH-supported research established the role of
    increased blood pressure in the kidney itself as an important cause of
    the loss of kidney function. These findings stimulated a recent
    clinical trial that demonstrated that captopril, a drug that lowers
    blood pressure in the kidney, could also reduce the progression of
    diabetic kidney disease by about 50 percent, a finding that will save
    the Medicare program an estimated $2.6 billion over the next ten years.
        Additionally, decreasing the anemia that accompanies chronic renal
    failure by the use of erythropoietin has been shown to reduce the
    incidence of heart failure in dialysis patients. Heart disease is the
    main cause of death in such patients.
                        asn request for fiscal year 1998
        The ASN is hopeful that a doubling of the NIH budget over the next
    five years as called for by S. Res 15 and H.Res 83, can be achieved,
    and the ASN looks forward to working with each member of this
    Subcommittee and its Senate counterpart to accomplish this goal. ASN
    requests that this Subcommittee approve the increase of nine percent,
    as requested by the NIH professional judgement budget, as the first
    step towards a doubling of the NIH budget by 2002.
        More specifically, for NIDDK and kidney research, it is our
    understanding that the President requested an increase of 2.2 percent
    over the 1996 level. This increase would place NIDDK in 16th place in
    relation to the increases the President has requested for other
    Institutes. Given the cost to human life and to the federal government
    caused by ESRD specifically, and of all the diseases for which research
    dollars are provided by the NIDDK, we urge this Subcommittee to provide
    a 9-percent increase to NIDDK, as well.
        Mr. Chairman, that concludes our statements and we are prepared to
    answer your questions.
                                     ______

    Prepared Statement of Christine Stevens, Secretary, Society for Animal
                             Protective Legislation
        Last year I submitted testimony to this Committee concerning the
    mistreatment of chimpanzees by The Coulston Foundation (TCF) of
    Alamogordo, New Mexico.
        The most recent example of destructive incompetence at The Coulston
    Foundation concerned a chimpanzee from the Laboratory for Experimental
    Medicine and Surgery in Primates (LEMSIP) where he had lived for many
    years. His name was Jello. Defying all normal protocol for
    anesthetization, the animals were first fed, then anesthetized.
    According to the whistle blower, Jello choked on his own vomit.
    According to Coulston, the death was caused by an even more astounding
    violation of proper procedure for anesthetization, by anesthetizing
    several animals in the same enclosure simultaneously with Ketamine.
    Jello collapsed before the last chimpanzee went down and, staggering
    like a drunken individual, this chimp put his foot on Jello's throat.
    He could not be revived.
        It appears that the turnover in veterinarians is such that proper
    procedures for handling of chimpanzees have been abandoned. The DHHS
    site visitors referred to in my last year's testimony expressed high
    praise for the head veterinarian, Dr. Pat Frost, for her management
    under difficult circumstances without adequate supporting staff. This
    January, Dr. Frost left The Coulston Foundation, and the bungled
    attempt to anesthetize three chimps in one go is likely to be followed
    by further egregious harm to other members of the huge colony.
        According to a press release by In Defense of Animals: ``Dr. Fred
    Coulston reportedly demoted Dr. Frost after she questioned conditions
    at the facility and then appointed himself as head of veterinary
    services. This brazen move by the controversial toxicologist, who has
    no formal veterinary training, shows TCF's total disregard for federal
    animal welfare laws and policies * * * In June 1996, TCF agreed to
    settle the [USDA] charges by paying a $40,000 fine, the second-largest
    ever levied against a research institution for violations of animal
    welfare laws.''
        Dr. Frederick Coulston has evidently been coached to avoid hostile
    comments about the hundreds of chimpanzees whose misfortune it is to
    remain under his tight-fisted control. He recently appeared on national
    television answering questions by Tom Brokaw and telling listeners that
    chimpanzees are too valuable to be retired (see his earlier sarcastic
    comments on retirement in attached testimony). He also misinformed the
    public by stating that chimpanzees do not get cancer.
        On April 21st, New York University students and alumni demanded a
    federal investigation of the NYU chimpanzee transfer to Fred Coulston.
    Student Olga Boshard said: ``NYU seems to have plenty of money to
    construct new secret animal laboratories here at the Washington Square
    campus, but we can't retire these poor chimpanzees. There was $700,000
    for chimp retirement that has literally been given away, and the
    retirement NYU promised is off forever.''
        NYU biology graduate James Hansen said, ``This chimpanzee situation
    is out of hand, and the fact that this new lab construction is a secret
    speaks volumes for the case overall.'' His charge of secrecy is based
    on a confidential e-mail message to New York University faculty from
    the Dean for the Faculty of Arts and Sciences, which reads:
        ``I want to alert you to the fact that there is a resurgence of
    activity among animal rights groups focusing on NYU. Although their
    arguments are principally with the Medical Center, the protests occur
    here because of our more central and visible location and the presence
    of large numbers of students. It has been quiet for over a year, but
    recent news stories that are only peripherally related to NYU have
    rekindled the situation and brought it back into public view. One of
    the organizations (Students for Education and Animal Liberation--SEAL)
    is attempting to directly recruit students and will be holding meetings
    and protests on campus from time to time. First, we keep a very low
    profile--there is little to no awareness of the presence of animals at
    Washington Square and we want to try to keep it this way. Even the
    construction on the roof is intended to be just another `biology
    laboratory.' If any students approach you regarding this issue, the
    response is that we do everything that is legally and morally required
    to assure the health and well-being of any animals. If there is any
    organized approach including student newspaper writers, you should
    refer the group to the Press Office, Mr. John Beckman. If you notice
    any unidentifiable or suspicious individuals in or around our
    laboratories, especially the tenth floor of Brown, please notify our
    department office or security. Above all please try to be discrete and
    take care to keep the profile of animal usage as low as possible.''
        Further shocking abuse of taxpayer funds, which went through NIH to
    Dr. Ron Wood of NYU, is documented by the U.S. Department of
    Agriculture in the course of its enforcement of the Animal Welfare Act:
    ``* * * the respondent significantly departed from the protocol by
    depriving nonhuman primates of water, in violation of section 2.3 1(a)
    of the regulations * * * the respondent used deprivation of water to
    handle animals without IACUC [Institutional Animal Care and Use
    Committee] approval * * * '' The complaint documents improper surgery
    and infection which resulted. The unfortunate monkeys, besides being
    repeatedly deprived of water, were receiving a drug toxic to the liver.
    When they died because of botched surgery, the autopsy showed an
    enlarged liver.
        In spite of a record of 378 violations of the federal Animal
    Welfare Act, Dr. Wood remained at NYU until he took a leave of absence
    and, with a grant from NIH, moved to the University of Rochester.
    According to the Campus Times, November 21, 1996: ``Wood's research is
    funded by a 10-year National Institutes of Health grant, of which there
    are two years remaining. The grant, in the amount of $417,266 per year,
    was originally awarded to Wood for his research at NYU * * * Following
    the expiration of his original grant, Wood took an indefinite leave of
    absence from NYU and joined UR a year later. Wood's grant was then
    reissued for use at the [University of Rochester] Medical Center.''
        We strongly object to continued government funding of The Coulston
    Foundation and of Dr. Ron Wood's crack cocaine experiments on macaques.
                                     ______

       Prepared Statement of Joseph W. Kemnitz, Ph.D., Interim Director,
     Wisconsin Regional Primate Research Center, University of Wisconsin--
                                    Madison
        Chairman Specter and Members of the Subcommittee: I am Dr. Joseph
    Kemnitz, Interim Director of the Wisconsin Regional Primate Research
    Center and Senior Scientist in the Department of Medicine at the
    University of Wisconsin School of Medicine. I am here to represent the
    seven Regional Primate Research Centers which are located at
    distinguished universities in the states of California, Georgia,
    Louisiana, Massachusetts, Oregon, Washington and Wisconsin. They
    receive support as part of the Comparative Medicine Program of the
    National Center for Research Resources of the National Institutes of
    Health(NCRR-NIH). I am proud to have served the Wisconsin Regional
    Primate Research Center for 20 years, and I welcome the opportunity to
    come before this Committee and talk about the accomplishments and
    current needs of the primate centers.
        Congress acted with great wisdom and foresight in 1960 to establish
    the national Primate Center Program by appropriating funds to build the
    seven centers we have today. In the nearly forty years since their
    establishment, it is increasingly clear that this was an excellent
    investment. These centers provide specialized and unique scientific
    capabilities not available through any other program within the
    Department of Health and Human Services. For a variety of reasons,
    including the ever-increasing complexity and sophistication of research
    questions and methodologies, the Primate Center Program is even more
    important today than when the centers were established. Well over 1,000
    investigators depend on the Regional Primate Research Centers to
    conduct research supported by the National Institutes of Health as well
    as other governmental and private-sector sources. These investigators
    are not only those based at the primate centers, but also include
    regional, national and international scientists who rely on resources
    and expertise at primate centers to conduct their research.
        The importance of nonhuman primates to progress in biomedical
    research cannot be overestimated. These animals are the closest
    surrogates for our own species, sharing more than 90 percent of the
    genetic makeup with humans. This close genetic similarity results in
    marked similarities in anatomy, physiology and behavior that make these
    animals outstanding models, in some cases the only appropriate choice,
    for understanding human health and disease processes. Nonhuman primates
    are often the vital link between basic research and human application.
    Examples of significant accomplishments resulting from primate research
    abound in the fields of neuroscience, reproduction and developmental
    biology, and infectious diseases, among others.
        Recent advances at Regional Primate Research Centers include
    increased understanding of the pathobiology of AIDS and the development
    of vaccines for protection against the disease. Indeed, the most
    prevalent model of AIDS, simian immunodeficiency virus, was established
    at Primate Centers. Our Center and others are now also engaged in
    research to prevent the AIDS virus from being transmitted from HIV-
    infected mothers to their babies.
        Other advances include better understanding of fertilization and
    early prenatal development, another example of a research area where
    the nonhuman primate offers unique benefits because of similarities to
    humans and differences from other laboratory species. Nonhuman primate
    research is also leading to enhanced knowledge of the genetic basis of
    disease and immunity, of development of obesity and its complications
    such as diabetes and hypertension, and of specific women's health
    issues such as endometriosis, polycystic ovary syndrome, and of changes
    during and after menopause.
        Very significant advances have also been made in the area of
    primate neuroscience. As Congress recognized in declaring this the
    ``Decade of the Brain'', neuroscience is now a highly productive and
    exciting research frontier, fueled by rapidly developing technologies.
    Primate center research has made significant strides in elucidating the
    neural mechanisms controlling voluntary movement, emotional behavior,
    and higher cognitive brain functions.
        Older people represent the fastest growing segment of our
    population. People are living longer and there is a need to improve the
    quality of life of older individuals. Efforts are underway at our
    Primate Center and elsewhere to uncover the basic processes of aging in
    primates and to develop new approaches to postpone the development of
    age-related infirmities, such as cancer, osteoporosis, loss of muscle
    mass, impaired vision and neurological problems. We have promising
    preliminary evidence to suggest that diet can reduce the incidence,
    delay the onset and lessen the severity of some metabolic diseases
    associated with aging. New hypotheses regarding the mechanism of these
    beneficial effects of reduced caloric intake are now being tested.
        In spite of their productivity the infrastructure at the Regional
    Primate Research Centers has had to cope with static base operating
    budgets. At one time the support for primate centers covered operating
    costs and research projects conducted at the centers. Today those base
    grants cover only a portion of the operating expenses and little or
    none of the research costs. The research projects themselves are now
    primarily funded through a rigorous system of peer review at NIH. The
    sum of these competitively awarded grants exceeds the size of the base
    grant by more than five-fold at some centers and requires resources
    exceeding those available in terms of animals, laboratories and support
    functions. We need additional operating funds in order to meet
    expeditiously the operational needs of the biomedical research
    community now.
        The use of primates in research represents less than 1 percent of
    laboratory animal use overall, but the demand for primate research is
    increasing because of the unique insights these animals can provide to
    human health issues. It is noteworthy that nearly half of academic
    primate research is conducted at the Regional Primate Research Centers,
    where there is multidisciplinary focus on questions of basic biological
    and medical interest. Greater numbers of external investigators are
    requesting access to primate center resources for projects that require
    the nonhuman primate model. The increasing concentration of primate
    research at the Primate Centers reflects the need for special
    facilities for these complex animals and special expertise for their
    husbandry, veterinary care and psychological well-being that is
    available at these sites. The centers are cost-effective because of
    their already established expertise and also because of economies of
    scale. It is very important that the primate centers continue to
    provide continuity of research context in which to address new
    questions and challenges as they arise. Life-long care of these animals
    in a laboratory setting has also greatly extended their life-expectancy
    enabling initiatives in the study of aging.
        The centers attempt to maintain self-sustaining colonies of the
    most commonly utilized species (for example, rhesus monkeys), which
    greatly reduces the need for removing animals from their natural
    environments and also provides better research subjects. For example,
    offspring of generations of laboratory-raised monkeys have completely
    known histories and pedigrees, which are essential for better
    understanding of the genetic basis of disease susceptibility.
        The Regional Primate Research Centers are nearly 40 years old and
    some renovation and replacement of facilities is becoming urgent, while
    expanded facilities are also required to catalyze the scientific
    opportunities into the next century. This is especially necessary for
    AIDS research and investigation of other infectious diseases which
    require special biocontainment capability. NCRR obtained construction
    authority from Congress in 1993 for the first time since 1969, and we
    are grateful for this support during the past few years. We are very
    concerned, however, that the President's budget request for next year's
    construction funding to NCRR is only $4M, which is 20 percent of the
    award for last year. We request that every effort be made to restore
    the NCRR budget allocation to at least last year's level and that a
    portion of this be specifically targeted for the Regional Primate
    Research Centers, so that we can maintain state-of-the-art, competitive
    facilities and equipment.
        In summary, the seven Regional Primate Research Centers have made
    substantial contributions in the realm of biomedical research and they
    will continue to do so. In order to accelerate progress, we ask that
    the base operating budgets for the primate centers be increased and
    that additional funding be allocated to renovation and new construction
    at these centers.
                                     ______

    Prepared Statement of Dan Larson, President and CEO, Polycystic Kidney
                              Research Foundation
        Dear Members of the Subcommittee:
        I have the good fortune of serving as the President & CEO of the
    Polycystic Kidney Research Foundation, the only organization worldwide
    solely devoted to programs of biomedical research and patient
    information for polycystic kidney disease.
        On April 24, 1997, I had the opportunity to provide personal
    testimony before the U.S. House Appropriations Subcommittee on Labor,
    HHS, Education and Related Agencies. It just so happened that April
    24th was also my 46th birthday!
        Though one might think including this personal reference to be
    self-serving, it is not. I share this to make the point that though
    birthdays are a cheerful experience for people like me, for countless
    American's with polycystic kidney disease (commonly referred to as
    PKD), reaching such a milestone might well be a fearful occurrence. I
    am blessed with good health, I look forward to each new year, and I
    don't at all mind turning 46!
        However, for 600,000 Americans and 12.5 million people worldwide
    who are afflicted with PKD, age 46 is the usual time when severe and
    life-threatening symptoms are occurring. Commonly, PKD causes patients
    at this age to experience high blood pressure, chronic fatigue and
    debilitating flank pain, recurrent urinary and kidney infections,
    enlarged heart and weakened valves, inguinal and abdominal hernias,
    diverticuli of the colon, pancreatic and hepatic cysts, life-
    threatening brain aneurysms and ultimately total loss of kidney
    function. PKD definitely has some very ``sharp edges.''
        If I had PKD, by age 46 the picture on the front of this report
    would likely be what my ``insides'' would look like. Each of my
    kidneys, which normally should be the size of my fist (pictured on the
    right), could easily be the size of a football (or larger) and weigh as
    much as 38 lbs EACH (like the one pictured on the left).
        If I had PKD, my kidneys would likely be shutting down by now, and
    by age 50 I would probably experience End Stage Renal Disease, commonly
    called ``kidney failure.'' According to the National Institute of
    Diabetes, Digestive and Kidney Diseases (NIDDK), PKD accounts for 10
    percent of ESRD in America, making it the 3rd leading cause of kidney
    failure in the U.S.
        Were I one of the 600,000 PKD patients in the United States, I
    would have the dubious distinction of having the most prevalent life-
    threatening genetic disease. Though not well known, PKD affects more
    individuals than the combined number of those with cystic fibrosis,
    hemophilia, sickle-cell anemia, muscular dystrophy and Downs syndrome!!
    PKD is two times more common than multiple sclerosis and twenty times
    more common than Huntington's disease * * * and there is no treatment
    or cure.
        PKD is not selective; it strikes children at birth, which is
    usually fatal, as well as adults in the prime of life. PKD is a
    dominantly inherited disease, equally affecting men and women,
    regardless of age, race or ethnic origin and it does not skip a
    generation. If I were a PKD patient, my children would have a fifty
    percent chance of inheriting it. In most cases, PKD produces kidney
    failure, requiring dialysis or a kidney transplant to survive. Although
    it is true that these therapies are lifesaving, they certainly are not
    curative, and many patients receiving these treatments suffer from
    resultant life-threatening complications.
        Since the Federal Government picks up most of the cost of dialysis
    and kidney transplantation, it is clear that an effective treatment for
    PKD (not to mention a cure) would yield more than a billion dollars
    annually in savings for the taxpayer.
        Due to numerous recent major research breakthroughs, including the
    discovery of the two principal PKD genes and their protein products,
    polycystin 1 and 2, scientific momentum is clearly evident and provides
    the basis for greatly expanding PKD research. In fact, in recent years
    this committee as well as the Senate Appropriations Committee, have
    singled out PKD research progress in your reports, asking NIDDK to
    commit substantially more effort and resources into PKD research. The
    time is now for this fertile area of investigation to catch up.
        Extraordinary scientific progress in PKD research is increasingly
    and widely hailed as noteworthy within the scientific community. In
    recent statements before this Subcommittee, NIH Director Harold Varmus,
    M.D., and NIDDK Director, Phil Gorden, M.D., have singled out advances
    in PKD research as gratifying examples of significant progress in
    understanding major genetic diseases. Additionally, Human Genome
    Project Director, Francis Collins, M.D., recently stated that, ``though
    we know more about cystic fibrosis than we do about PKD, I believe that
    PKD research is likely to catch up fairly soon.''
        With all of this excitement about PKD research, it would surely not
    be amiss for this Committee to support a ``step increase'' of 50
    percent in the overall PKD research allocation at NIDDK, from the
    current $7 million to a modest $10.5 million. This would greatly
    increase the likelihood of discovering a treatment or cure for
    polycystic kidney disease. This would be an excellent investment in
    future savings of countless lives, and tens of billions of dollars to
    the federal government. I urge the Committee to take advantage of this
    extraordinary opportunity for intervention by funding this effort
    accordingly.
        I thank this Committee for its past support in winning the war on
    PKD.
                                     ______

                          Portrait of a Silent Killer
        This lethal disease is silently stalking more than 600,000
    American's at this very moment. If you think it is frightening to look
    at, just imagine how its victims must feel. This genetically inherited
    abnormality can strike children at birth (generally fatal) or adults in
    the prime of life without preference to race or gender. It develops
    slowly, forming fluid-filled cysts which ultimately destroy otherwise
    healthy kidneys, vital life-supporting organs. There is no known cure
    or efficacious treatment.
        Although over one billion dollars are spent annually through
    Medicare and Medicaid for dialysis, transplantation, and related
    treatments, there are surprisingly few dollars spent on PKD research.
    Occurring 2 times more often than MS, 10 times more often than Sickle
    Cell Anemia, and 20 times more often than Cystic Fibrosis or
    Huntington's Disease, PKD affects more than 12.5 million people
    worldwide. As the largest segment of our population, America's ``boomer
    generation'' reaches middle-age, adult PKD could reach colossal
    proportions. Skyrocketing healthcare costs will only be outweighed by
    needless suffering and loss.
        The quickest, most ``user friendly'' method of conveying the nature
    of our mission is contained in the following five ``word pictures'', a
    laymen's description of our battle with polycystic kidney disease
    (PKD).
    ``Water Balloons and Crabgrass''
        This is what we are up against. PKD, the most common life
    threatening genetic disease, causes water balloon type cysts to grow in
    the kidneys. Though innocently looking, over time a cyst can grow to
    the size of an egg (or a baseball) and together with hundreds of
    likesize cysts, enlarge a kidney to be the size of a football or
    larger. As they grow, cysts crowd out kidney function, and ultimately
    cause the kidney to fail.
        Treating PKD is similar to treating a lawn for crabgrass; a person
    can dig it out, spray it, or pre-emerge a chemical to prevent it. With
    PKD, some surgeons have been able to surgically drain cysts, the
    equivalent of trying to ``dig'' it out. However, this procedure has not
    been highly effective and has many risks.
        Recently studies on laboratory animals at UCLA have shown some
    success treating PKD mice with taxol, the equivalent of a ``spray'' to
    stop PKD. This is a promising area of potential intervention, but much
    more must be done.
        Finally, since the two genes for PKD have now been identified and
    their protein products (polycystin 1 and 2) have been discovered,
    scientists strongly believe that in the not-too-distant future a gene
    therapy can be developed to be ``pre-emerged'' to correct the genetic
    defect and prevent PKD from being expressed.
    ``D-Day''
        In June of 1944, D-Day marked the ``beginning of the end'' of World
    War II. In June 1994, the war with PKD had its D-Day when the gene that
    causes 90 percent of PKD was identified. Researchers truly call this
    the beginning of the end. Now they can much better understand the
    proteins expressed by the PKD genes and develop methods of treating and
    curing this disease.
        As in 1944, once a beach head was established on D-Day, what won
    the day (and eventually the war) was the Allies ability to re-supply
    more arms and men than the Third Reich could destroy. However, in our
    struggle with PKD, the ``beach head'' has been established but there
    are limited resources currently available to mount successful attacks
    on PKD through biomedical research. The National Institutes of Health
    (NIH) can only fund a small percentage of the cutting edge scientific
    projects it receives.
        Current and future generations of PKD families need the assurance
    that PKD can and will be conquered, and sooner * * * not later. But
    without cultivating new resources, victory may be too late for many.
    ``Underdogs''
        The PKR Foundation is fifteen years old but still too few people
    know about PKD and the PKR Foundation. This in spite of the fact that
    there are 600,000 Americans with this life-threatening disease. A
    comparison might be helpful.
        Multiple Sclerosis affects about 300,000 Americans, half of that of
    PKD. However, the MS Society has been around since 1946, it has 90
    Chapters, 55 Branches, multiple hundreds of staff, and an income budget
    of $110 million per year.
        In contrast, the PKR Foundation represents twice the disease
    prevalence of MS. However, we have no Chapters or Branches, we have a
    total of 7.5 staff (full-time employees) and a budget of $1.5 million.
    Interestingly, we are the only organization worldwide solely devoted to
    programs of biomedical research and patient information for polycystic
    kidney disease.
        In 1997, according to the National Journal, the following is the
    amount of money that the federal government is spending on research on
    some well known diseases:

                                                   [Dollars in Millions]
    ----------------------------------------------------------------------------------------------------------------
                                                                                                       Amount Spent
                                                                       1997 Spending   Afflicted in    Per Affected
                                                                            \1\            U.S.           Person
    ----------------------------------------------------------------------------------------------------------------
    AIDS............................................................          $1,500         205,102          $7,313
    Heart Disease...................................................             923      13,500,000              68
    Breast Cancer...................................................             509       2,600,000             196
    Diabetes........................................................             313      16,000,000              20
    Parkinson's.....................................................              78       1,000,000              78
    This year, total spent on research for PKD is...................               7        6000,000              12
    ----------------------------------------------------------------------------------------------------------------
    \1\ Source: National Institute of Health estimate.

        It's easy to see that we are fighting an uphill battle.
    ``Conversions''
        Though not evangelists, we are wholeheartedly committed to
    conversions. We convert ignorance into knowledge through our
    professional and public education programs. We convert despair into
    hope through our patient education seminars and communications. We
    convert isolation into community through our Friends Program * * *
    volunteer groups around the U.S. who reach out to PKD patients and
    their families. We convert ideas into reality through the research we
    fund and we convert small dollars into large dollars by funding starter
    grants and by working with congress to intensify funding for the
    National Institutes of Health, in support of PKD research.
    ``Shoe Leather''
        The PKR Foundation offers interested individuals the opportunity to
    be a part of the PKD solution. They can transfer their interest into
    action in a number of ways. People can organize a Friends Group,
    helping the Foundation gain awareness and promote patient education,
    support and membership. They can lobby congress * * * write, call or
    visit their congressional representatives about the importance of PKD
    research. They can become a Member and financially support the PKRF
    mission. They can help us get the word out by encouraging media
    contacts they know to help convey our mission. Or they can help us by
    providing linkage to a potential source of research or educational
    funding.
        We are collectively committed to conquering this disease and have
    found our efforts to be more successful when pooling our time, talents
    and resources.
                                     ______

            Prepared Statement of New York University Medical Center
        On behalf of the New York University Medical Center (NYUMC), I
    would like to express our gratitude for the opportunity to submit this
    statement for consideration by the Subcommittee.
        New York University (NYU) was founded in 1831 and is the largest
    private university in the United States, with an enrollment of 50,200
    full time and part time students. The NYUMC, an integral component of
    NYU, encompasses one health care philosophy with three key priorities:
    education of future physicians, exemplary patient care, and innovative
    scientific research. NYUMC is recognized as one of the nation's leading
    biomedical resources, combining excellence in patient care, research
    and medical education.
        The NYUMC complex is comprised of the NYU School of Medicine and
    Post-Graduate Medical School, Tisch Hospital, the Rusk Institute of
    Rehabilitation Medicine, the Hospital for Joint Diseases and the New
    York Downtown Hospital.
        Approximately 29,000 patients are admitted to NYUMC's Tisch
    Hospital annually. In addition, NYUMC faculty serve as the attending
    physicians at Bellevue Hospital, which is New York City's largest
    municipal hospital where over 400,000 patients are treated each year.
    The NYU/Bellevue campus provides care to the largest AIDS and TB
    patient populations in New York City, NYU physicians also staff the
    Goldwater Memorial Hospital--the city's largest chronic care facility.
    The facilities of the NYUMC complex support basic and clinical research
    in a wide variety of serious and debilitating diseases such as Acquired
    Immunodeficiency Syndrome (AIDS), Tuberculosis (TB), breast and
    prostate cancer, diabetes and other important endocrine abnormalities,
    cardiovascular diseases, neurological diseases (including Alzheimer's)
    and genetic and developmental abnormalities.
        I would like to thank you, Chairman Specter, and members of the
    Subcommittee, for your leadership in the field of biomedical research.
    Over the years, you have clearly demonstrated that you recognize that
    today's investments may be tomorrow's cures. As the Federal government
    continues to invest more in research and technology, we are advancing
    our knowledge about the prevention and treatment of disease. In the
    past few years, we have witnessed astonishing advances in biomedical
    research. As both this Subcommittee and the National Institutes of
    Health (NIH) have shown, basic research drives the continuing success
    in medical discoveries that may prevent, or even cure, some of the most
    complicated and dreaded diseases.
        I am pleased that the President's fiscal year 1998 budget includes
    $13.3 billion for university-based research which represents an
    increase of $289 million over 1997. With continued strong Federal
    support of medical research, our researchers will be able to capitalize
    on many of the opportunities that exist in basic and clinical research
    and will help the United States maintain its world-renowned leadership
    in biomedical research. NYUMC urges Congress to support the
    recommendation of the Ad Hoc Group for Biomedical Research which
    advocates a 9 percent increase for the NIH in fiscal year 1998.
        However, NYUMC is concerned with the recommendation in the
    President's budget to drastically reduce funding for health professions
    education and area health education centers. I urge the Subcommittee to
    review the enormous success of these programs and to consider funding
    levels consistent with past years.
        In addition to supporting basic biomedical research, I would also
    like to thank you and the members of your Subcommittee for recognizing
    that the Federal government has an important role to play in the
    development of our nation's technology infrastructure. The rapid
    development of communications and information technology presents
    enormous opportunities for transforming the health care delivery system
    and increasing access to quality health care for traditionally unserved
    and underserved groups. Telemedicine has applications in patient care,
    education, and research. NYUMC has a number of exciting technology
    initiatives underway and under development in these areas.
        One proposed initiative would develop a provider network to
    facilitate access to family-based HIV/AIDS primary and specialty care
    linked to community, mental health, and substance abuse services for
    HIV-affected, women, children, and adolescents. This initiative
    recognizes that HIV-infected women with children face a number of
    barriers to care. Certain services, such as mental health and substance
    abuse services, are particularly difficult to assess and are limited in
    availability to this population. The proposal offers the prospect of
    understanding current service delivery patterns, which are dictated in
    large part by funding streams rather than family need, and of
    identifying opportunities for more efficient service delivery.
        Another project underway at NYUMC is the development of a high
    speed data communications network which will enable NYUMC and its
    affiliated hospital organizations to share selected business, clinical,
    and research information, and to develop and share advanced information
    systems as partners in an integrated health care delivery system. The
    utilization of such information, some of which would be in the public
    domain via internet access, would allow for enhanced communication of
    clinical and research information to the general public and to
    professionals.
        The National Library of Medicine (NLM) has played an important role
    in improving health care information sharing among researchers,
    clinicians and educators through the implementation of the national
    information infrastructure and the internet. In addition, NLM has
    supported projects to evaluate the cost effectiveness, quality, and
    potential to increase access, of telemedicine networks. NYUMC supports
    these efforts, and is pleased that the President's budget recommends an
    increase for NLM over fiscal year 1998.
        Technology has important applications in the area of education as
    well as health care. I am pleased that the President's fiscal year 1998
    budget increases funding for a number of advanced computing and
    telecommunications initiatives. NYUMC shares the President's belief
    that in our efforts to develop our information infrastructure, we must
    ensure that it does not bypass our classrooms. The fiscal year 1998
    budget includes $500 million in fiscal year 1998 for two important
    technology programs--the Technology Literacy Challenge Fund and the
    Technology Innovation Challenge Grant program. This is the second
    installment of the President's $2 billion Technology Literacy Challenge
    Fund to encourage states and communities, in conjunction with private
    partners, to develop and implement plans for fully integrating
    educational technology into their school curriculum.
        NYUMC believes that the twenty-first century education and work
    environment can only be achieved through the integration of the
    computer and modern communications technologies. The Hippocrates
    Project, established in 1987, is an example of why the NYUMC is
    considered to be one of the nation's leaders in applying computers to
    medical education. Hippocrates is a multi-disciplinary effort that
    explores the ways that information technology can augment the learning
    process. NYUMC faculty are also using the latest technological
    advances, such as the use of virtual reality for clinical training and
    new educational technologies to abbreviate the time students now spend
    in the classroom. Such computer based information systems and internet
    access of selected information will play an important role in the
    transmission of information relating to basic and clinical research as
    well as the latest approaches in treating disease.
        The Department of Education funds a number of important programs
    that seek to address problems and encourage improvement in
    postsecondary education by funding innovative projects. One such
    example is the Fund for the Improvement of Postsecondary Education
    (FIPSE). We encourage Congress to continue to support FIPSE in fiscal
    year 1998. The Office of Educational Research and Improvement also
    funds programs that seek to promote excellence in teaching through
    professional development programs, as well as through the development
    and implementation of educational technology.
        All of the initiatives underway and under development at NYUMC
    described above offer the promise of ensuring that we continue to train
    high quality physicians, deliver health care services more efficiently
    and effectively as well as to increase access to the medically
    underserved. All of these initiatives depend upon having the Federal
    government as a partner to achieve these ambitious goals. NYUMC looks
    forward to continuing to work with members of this Subcommittee to
    ensure that we deliver the benefits that these initiatives promise to
    millions of individuals.
        Thank you, Mr. Chairman and members of the Subcommittee, for
    allowing me this opportunity to submit testimony on behalf of NYUMC.
                                     ______

                Prepared Statement of the Society of Toxicology
        The Society of Toxicology (SOT) is pleased to have this opportunity
    to submit written testimony in support of fiscal year 1998 funding for
    the National Institutes of Health (NIH), and specifically for the
    National Institute of Environmental Health Sciences (NIEHS).
        The Society of Toxicology (SOT) is a professional organization that
    brings together over 4,000 toxicologists in academia, industry, and
    government. A major goal of SOT is to promote the use of good science
    in regulatory decisions. With scientific data as our guide, we can use
    sound judgment in addressing numerous environmental issues. In
    particular, we work closely with the National Institute of
    Environmental Health Sciences (NIEHS) in addressing research related to
    environmental risk.
        One program we would like to highlight is the Superfund Basic
    Research Program. This program is administered by NIEHS although it is
    funded through a pass through from the Environmental Protection Agency
    (EPA) to NIEHS. SOT is interested in Superfund because the cleanup of
    hazardous waste is an enormous undertaking which can be greatly
    facilitated through toxicology research. The Superfund Basic Research
    Program is the only scientific research program focused on health and
    cleanup issues for Superfund hazardous waste sites.
        The Superfund Hazardous Substances Basic Research Program supports
    university and medical school research to understand the public health
    consequences of local hazardous waste sites, as well as to develop
    better methods for remediation. Currently, there are 18 programs at 70
    universities involving more than 1,000 scientists.
        The primary purpose of SBRP is to provide the scientific basis
    needed to make accurate assessments of the human health risks at
    hazardous waste sites. In addition, research data is used to determine
    which contaminated sites must be cleaned up first, to what extent clean
    up is needed, and how best to clean up contaminated sites in the most
    cost-effective manner. This is accomplished by developing more rapid
    and cost-effective strategies for measuring the existence and movement
    of chemicals in and around waste sites, placing major emphasis on
    technology to detect these chemicals in humans and to analyze their
    effects. Collaboration between engineers and physical chemists is
    encouraged to better understand how chemicals are physically trapped in
    soils so that improved clean-up strategies may be devised. In addition,
    basic biological, chemical, and physical methods to reduce the amount
    and toxicity of hazardous substances are developed.
        Research projects include basic research on the potential chemical
    effects on cancers, such as breast and prostate, birth defects, and
    other environmental health-related diseases. The interaction, common
    goals, and exchange of knowledge that result from this research program
    are among the most highly developed in the United States public health,
    environmental sciences and engineering communities. Moreover, it is
    important to note that this is the only university-based research
    program that brings together biomedical and engineering scientists to
    provide the science base needed for making accurate assessments of
    human health risks and developing cost-effective cleanup technologies.
        Much progress has been made as a result of research conducted under
    the auspices of the SBRP. This includes discoveries about the
    neurotoxicity and estrogenicity of PCB's, advancements in mechanisms to
    assess the risks to human health of hazardous waste exposure, toxic
    mixtures, and arsenic in drinking water, and developments in
    remediation technologies which ensure timely and cost-efficient
    cleanups.
        We believe the Superfund Basic Research Program is critical to the
    success of the Superfund hazardous waste cleanup program and much of
    this success is due to the tremendous effort NIEHS has done in
    administering the program. Funding for SBRP represents a tiny
    percentage of the total funding provided for hazardous waste cleanup.
    Unfortunately, every year we fight a battle with the President and EPA
    to continue funding this research. Once again, in his budget, the
    President has requested a 21 percent decrease in funding for SBRP. Last
    year the President requested a 60 percent funding cut. We have
    testified before the House Appropriations Subcommittee on Veterans
    Affairs, Housing and Urban Development and Independent Agencies, and
    have urged them to reject the President's request and fund this program
    at $37 million, the level recommended in the pending Superfund
    reauthoriztion legislation.
        Communities near hazardous waste sites want to know if hazardous
    chemicals are reaching their water or air supplies. They want to know
    if low levels of these contaminants affect their health and their
    children's health. They want it cleaned up. Our universities are
    responding with technology driven research efforts which are results-
    oriented and economically feasible, and are scientifically credible
    with the public. This is only possible because of the research effort
    funded through the Superfund Basic Research Program.
        Members of the Society of Toxicology strongly believe that our
    investment in medical research is well worth it. We are appreciative of
    the efforts of NIEHS and are supportive of the research priorities
    identified by NIEHS Director Dr. Kenneth Olden. NIEHS has been very
    effective in raising public awareness about the linkages between the
    environment and human health.
        Research supported by the NIH and NIEHS is helping us to understand
    how our environment affects our health. Research is being conducted to
    study the effects of air pollution such as ozone, particulate matter,
    and acid aerosols on our respiratory health. NIEHS supported research
    has shown the health effects of lead, leading to the reduction of many
    sources of environmental lead. Researchers are now expanding their
    efforts to better understand why some people are more susceptible to
    environmental exposures than others. The new Environmental Genome
    Project will further explore these questions. Finally, NIEHS under the
    auspices of the National Toxicology Program are developing new mouse
    models to more efficiently test the toxicity of chemicals. This
    increased efficiency will allow for more chemicals to be tested.
        Therefore, we urge you to double funding for the NIH over five
    years as recommended in S. Res. 15. This would require a 15 percent
    increase in NIH funding for fiscal year 1998. In addition, we urge you
    to increase funding for NIEHS by $40 million over last year's level for
    a total of $348 million. This would bring NIEHS' funded grant level to
    the NIH average. NIEHS currently funds only 21 percent of all grant
    applications.
        Thank you for considering our request. We look forward to working
    with you in the future as you determine the Committee's funding
    priorities.
                                     ______

       Prepared Statement of Raymond Fonseca, Dean and Professor of Oral
       Maxofacial Surgery, University of Pennsylvania, School of Dental
                                    Medicine
        Thank you, Chairman Specter, for inviting me to submit testimony
    for inclusion in your Subcommittee's fiscal year 1998 hearing record. I
    am Raymond Fonseca, Dean and Professor of Oral Maxofacial Surgery at
    the University of Pennsylvania School of Dental Medicine (UPSDM). On
    behalf of UPSDM, I would like to express support for the National
    Institute of Dental Research (NIDR), the National Library of Medicine
    (NLM), and the National Center for Research Resources (NCRR).
        Penn's School of Dental Medicine was established in 1878, and is
    one of the oldest university-affiliated dental institutions in the
    nation. Over its one hundred and nineteen year history, Penn has
    remained at the forefront in teaching and implementing the newest and
    best diagnostic, prophylactic, and curative techniques.
    National Institute of Dental Research
        UPSDM has a longstanding tradition of excellence in oral health
    research, and I am proud to note that our faculty have had great
    success in obtaining funding from NIDR.
        During fiscal year 1998, the National Institute of Dental Research
    (NIDR) plans to enhance research in the areas of oral cancer,
    opportunistic infections associated with immunodeficiency, chronic
    pain, biomimetics and drug development. NIDR is also playing a
    significant role in several trans-NIH special initiatives in fiscal
    year 1998, including: the biology of brain disorders, therapeutics/drug
    development, and the genetics of medicine.
        To ensure that NIDR will be able to continue to expand research to
    address the full range of basic, translational, clinical, and
    demonstration research with regard to craniofacial health and disease,
    it is critical to increase funding in fiscal year 1998 for the National
    Institutes of Health. Penn supports the professional judgement budget
    and the recommendation of the Ad Hoc Group for Biomedical Research of a
    9 percent increase for NIH in fiscal year 1998.
    National Library of Medicine
        UPSDM has made one of its highest priorities the development of new
    technologies to enhance our educational, research, and service
    missions. In fact, UPDSM was one of the first dental schools in the
    nation to establish a computer program for dental students. Besides
    being introduced to usual business applications, such as word
    processing, database management, and electronic spreadsheets, they are
    also shown the various ways in which information technology is and can
    be used in dental care delivery, i.e., dental practice management
    programs, clinical charting programs, national dental networks, and
    clinical patient management programs.
        The National Library of Medicine (NLM) has been a leader in
    implementing the national information infrastructure, which is an
    effort to develop a structure to share information among researchers,
    clinicians, and educators. This information infrastructure has
    important applications in the area of health care, and NLM continues to
    fund innovative projects that attempt to: design telemedicine networks;
    measure the effectiveness of networks; develop mechanisms to ensure the
    privacy of medical records, and other important issues. These projects
    will provide us with important information about telemedicine and its
    applicability to broader populations and geographic areas. I am pleased
    that the President's budget includes an increase for NLM in fiscal year
    1998.
    National Center for Research Resources
        The National Center for Research Resources (NCRR) at NIH plays an
    critical role in improving and maintaining our nation's biomedical
    research infrastructure. By supporting the construction and renovation
    of research facilities, NCRR fosters the growth of biomedical research
    and ensures that we will be able to maintain our leadership in this
    area. A 9 percent funding increase for NIH will enable NCRR to continue
    to meet its ambitious mission of serving as a catalyst for discovery
    for NIH-supported research throughout the nation.
        UPSDM was the first and only dental school to receive a general
    clinical research grant from NCRR, and I am hopeful that NCRR will
    continue to support research for oral health care.
        Thank you again, Mr. Chairman, for allowing me to submit this
    testimony for consideration by your Subcommittee.
                                     ______

              Prepared Statement of the Cystic Fibrosis Foundation
        On behalf of the 30,000 children and young adults with cystic
    fibrosis (CF), the Cystic Fibrosis Foundation (CFF) is pleased to
    submit public witness testimony to support fiscal year 1998
    appropriations for the National Institutes of Health (NIH).
    Specifically, we request your continued support of research activities
    sponsored by the National Institute on Diabetes, Digestive and Kidney
    Diseases (NIDDK) and the National Heart, Lung and Blood Institute
    (NHLBI). Your past vote of confidence in the NIH has made the future of
    individuals with CF much more promising. This important investment in
    the NIH has led to pioneering gene therapy experiments in patients, and
    has paved the way for developing other new approaches to successfully
    manage and eventually cure CF.
        Before we discuss our request for fiscal year 1998, we would like
    to thank this Committee for its past support of the NIH. We are acutely
    aware of how difficult the decision making process is in such a
    restrictive fiscal environment. The Foundation applauds the Committee
    for the specific CF language included in the fiscal year 1997
    Appropriations bill. As you are aware, this played an important role in
    the internal allocation decisions made at the NIH last year.
        Because of your support of the NIDDK and the NHLBI, nearly 30
    innovative new projects were initiated last year as a result of a
    special request for applications. In addition, the Foundation, through
    its innovative program which funds ``meritorious'' grants that are
    unfunded by the NIH, was able to fund an additional 59 projects.
    Together, we can confidently say, that all scientifically meritorious
    grants submitted in response to the announcement are now underway. This
    clearly exemplifies a dynamic partnership between a Foundation, the
    Congress, and the Federal research community.
        The NIH and the CFF continue to work together, providing a base for
    leadership in this country that is unparalleled. This leadership is
    critical to continue the programs that will one day find a cure for
    this deadly disease. Already we have achieved a wonderful pipeline of
    new scientific discoveries that will be translated into lifesaving
    treatments for thousands of individuals with CF. Much of the progress
    in CF research has been made possible because of this Committee's
    continued support and vision to nurture and expand biomedical research
    in our nation.
        Despite all of this, individuals with CF remain in an environment
    of uncertainty, cautiously optimistic as they wonder how CF research
    will continue to move forward. This year, you will hear testimony
    punctuating the need for increased federal funding for many entities,
    including medical research. It is our hope, however, that one day there
    is not going to be a need for extensive deliberation--not because an
    infinite pool of resources has suddenly become available to draw from,
    but because a portion of the need has been eliminated. For individuals
    suffering the death sentence of cystic fibrosis, the need will be
    eradicated the day researchers correct CF cells permanently. This will
    be the ultimate victory for patients who have fought a courageous, yet
    exhaustive fight against this disease for so long.
        When we are young, we believe we are invincible. For individuals
    with cystic fibrosis, that gleaming ray of youthful arrogance is
    clouded by the shadow of a merciless chronic disease--a disease that
    introduces a chilling reality into the minds of these patients early
    on, that the road of life is a finite one.
        You have the ability to give back the carefree outlook robbed away
    from children and young adults with CF. The Foundation once again asks
    for your help as we set forth, together, to write the final chapter of
    our success story.
        Gene therapy research holds tremendous promise for individuals with
    CF. Gene therapy trials, involving more than 100 patients with CF, are
    taking place throughout the country. Nine research centers jointly
    funded by the CFF and the NIH are evaluating gene therapy technology
    and developing new vectors. The CFF/NIH Gene Therapy Centers are
    located at: the University of California at San Francisco; Johns
    Hopkins University; Cornell University; the University of Iowa; the
    University of Pennsylvania; the University of North Carolina at Chapel
    Hill; the University of Cincinnati; the University of Washington at
    Seattle; and Baylor College of Medicine. We strongly encourage you to
    recommend continued support of these gene therapy centers of
    excellence, as well as other center-based programs aimed at further
    understanding the pathogenesis of CF. Through the continued support of
    programs supported by the NIDDK and the NHLBI, we are optimistic that
    new therapies will continue to be forthcoming and have a positive
    impact in the lives of individuals with CF.
        The unique synergy between the NIH and the emerging biotechnology
    community must continue to be finessed. The infusion of research
    dollars into the NIH will assure viability of the evolving
    biotechnology industry. An increase in NIH funding ensures that future
    scientists and clinicians will be trained to keep the United States on
    the cutting edge of biomedical technology. Pulmozyme, the first new
    drug developed specifically for CF in 30 years, is a product of the
    U.S. biotech industry. The CFF works aggressively to see that new
    therapeutic interventions move quickly from the test tube to the
    bedside.
        More than a dozen new CF drugs are charted to begin clinical trial
    investigations. Phase III clinical trials have already been completed
    for the drug TOBI. This reformulated antibiotic, now an aerosol,
    successfully manages chronic pseudomonas aeruginosa infections in many
    individuals with CF. Phase I clinical trials of aerosolized uridine
    triphosphate (UTP), DMP-777, and CPX are underway as well. UTP helps to
    liquefy CF mucus by stimulating chloride secretion. DMP-777 may
    interrupt the viscous cycle of CF inflammation by inhibiting the over-
    production of destructive enzymes released by excess white blood cells.
    CPX is an innovative synthetic compound that binds to the defective
    CFTR protein inherent in CF cells, and repairs it.
        To facilitate the initiation of clinical trials, leading Foundation
    researchers are developing a centralized clinical trial network. This
    new innovative network equipped with standardized tools, laboratories,
    and techniques, will facilitate Phase I and II drug development. We ask
    that this Committee direct the NIDDK, NHLBI, and the National Center
    for Research Resources to develop key mechanisms to assure rapid
    translation of basic research into new therapeutic interventions. While
    we applaud the acquisition of new knowledge through current programs at
    the NIH, a mechanism must be created to nurture clinical research.
    Creative development of an institutional infrastructure, similar to
    that already in existence to support basic research in teaching
    institutions, should be created to support and monitor ongoing clinical
    trial investigations.
        The Foundation understands current funding constraints and that
    federal programs--regardless of their merit--have been placed in
    competitive positions. Stable, long-term funding will not be possible
    without a dedicated funding source. Thus, the CFF enthusiastically
    supports S. 441, the ``National Fund for Health Research Act,''
    proposed by Senators Specter and Harkin, which would provide a
    supplemental funding source for the NIH through a one percent surcharge
    on health insurance premiums. However, we urge Congress to seriously
    consider our request to double NIH appropriations over five years,
    requiring a 15 percent increase in funding for fiscal year 1998. At the
    very least, we support the recommendation of the Ad Hoc Group for
    Biomedical Research for a minimum of a 9 percent increase, so that the
    institution may grow to take advantage of the specific opportunities
    that abound.
        The futures of many young individuals hang in the balance now.
    Please do not keep them waiting.
                                     ______

              Prepared Statement of the American Heart Association
        The non-profit American Heart Association, powered by 4.2 million
    volunteers in virtually every community throughout the nation, is
    alarmed that federal government, through its National Institutes of
    Health and the Centers for Disease Control and Prevention, is not
    devoting sufficient resources for medical research and prevention of
    our nation's number one killer--heart disease--and to our country's
    number three killer and most disabling disease--stroke.
        Some 57 million Americans of all ages suffer from heart disease,
    stroke and other cardiovascular diseases. The absolute number of
    Americans with heart disease is expected to increase dramatically with
    the aging of the ``baby boomer'' generation. While heart disease and
    stroke occur at all ages, they are most common in people over 65--an
    age group that is now about 13 percent of the U.S. population and will
    be 20 percent by year 2030. Heart attack, stroke and other
    cardiovascular diseases do not begin late in life. They often begin in
    childhood and progress through mid-life. Thus, our research and
    educational efforts must be targeted at populations of all ages.
        Thanks to advances that already have occurred in defining and
    countering the risk factors for heart disease and stroke and in the
    treatment of these and other cardiovascular diseases, more people are
    surviving heart attack and ``brain attack'' (stroke), and in many
    cases, are developing these diseases at later ages than did their
    parents or grandparents. Due to these accomplishments made possible by
    previous investment of funds for research and education by the federal
    government as well as the American Heart Association, heart disease and
    stroke have evolved into chronic--or long-term--health problems much
    like diabetes and arthritis. No longer does a heart attack or stroke
    necessarily mean immediate death. But, they usually can mean long-term
    disability, requiring costly medical attention, and loss of
    productivity and quality of life. Over the last 20 years there has been
    a dramatic increase in the indicators of prevalence of heart disease
    and stroke. This situation will worsen in the 21st century.
        Cardiovascular diseases already are a staggering burden to our
    nation's health care system, consuming about 1 out of 6 health care
    dollars, with a price tag in medical expense and lost productivity of
    $260 billion per year. No other disease costs this nation so much
    money, and that amount is expected to increase dramatically with the
    growth of the senior citizen population and as a consequence of the
    relatively recent trends, in all ages of our population--but
    particularly in the young--of smoking, obesity and physical inactivity,
    which are among the several risk factors for heart disease and stroke.
        The American Heart Association challenges our government to invest
    additional funds in cardiovascular disease research. Our government's
    response to this challenge will help define the health and well-being
    of citizens in the next century. We have a choice between: a nation of
    physically and mentally healthy citizens, capable of enjoying an
    active, productive life, living as independently as they wish late into
    their lives; or a population of frail elderly individuals, disabled by
    stroke and congestive heart failure, the latter too often the end-
    result of heart disease.
    Federal support for heart disease and stroke research and education:
        The AHA remains a strong advocate of increased overall funding for
    NIH and CDC, since the programs of both agencies contribute to the
    health and well-being of our nation's citizens. NIH research maintains
    America's status as the world leader in biotechnology and
    pharmaceuticals. As a member of Research!America, AHA subscribes to
    their call, based on state poll results, to double the medical research
    budget by year 2002. AHA supports measures in Congress to reach this
    goal for NIH.
        However, the AHA believes it must exhibit the self-interest
    appropriate to a non-profit organization dedicated to reducing death
    and disability from diseases that rank as our population's number one
    and three killers. Therefore, speaking for the 57 million Americans who
    today suffer from cardiovascular diseases and millions who are now
    healthy but who are susceptible to developing these diseases, the AHA
    must demand that the historical pattern of federal government
    underfunding of heart disease and stroke research and education be
    reversed, and that research on these diseases be funded at a level that
    reflects the tremendous impact of these disorders on the population and
    the exciting research opportunities that exist in cardiovascular
    science.
        Therefore, the AHA asks the U.S. Congress to insure that the
    NHLBI's heart research and NINDS' stroke research programs be doubled
    in absolute dollars by year 2002. These funds would help insure that
    existing programs be funded at an adequate level and that investments
    are made in new initiatives, identified later in this document.
        For reasons that are unclear, many people have labored under the
    misperception (based perhaps on several recent successes in treatment)
    that cardiovascular diseases are solved problems, and as a result the
    seriousness of public health messages about healthy lifestyle have been
    undermined, and there has been devastating underfunding of NIH research
    on heart disease and stroke. Now is the time to capitalize on progress
    in understanding heart attack, stroke and other cardiovascular diseases
    when promising, cost effective breakthroughs are on the horizon. These
    research advances could pave the way to disease prevention and even a
    cure.
        However, if adequate funding of heart disease and stroke research
    exists the following could occur:
      --We will examine how heart disease and stroke begin at the most
            basic level (inside the cells lining the blood vessels to the
            heart and brain) and the genetic factors that influence each
            individual's risk for developing the disease and his/her
            response to medical treatment. Armed with this knowledge,
            researchers will be better equipped to design prevention and
            treatments that will bring heart disease and stroke down from
            their current ranks as the number one and number three killers,
            respectively.
      --Talented physicians and scientists dedicated to the prevention and
            treatment of heart disease and stroke will be nurtured by NIH
            grants designated for scientists under the age of 40.
      --Pharmaceutical and biotechnology companies will be able to develop
            many more effective drugs and other treatments because they
            have lacked new knowledge that traditionally has emerged from
            NIH supported basic research on such exciting topics as the
            interplay of cells, fat particles in the blood and inflammation
            inside the blood vessel in causing the obstructions that cause
            heart attack and stroke.
        The following outlines the American Heart Association's
    recommendations for funding levels at NHLBI, NINDS, CDC and various
    other agencies.
    National Heart Lung and Blood Institute:
        A serious shortfall has occurred in NHLBI's funding of its
    extramural Heart Program. In constant dollars from fiscal year 1986 to
    fiscal year 1996, the overall NIH budget increased 35.9 percent--while
    funding for the Heart Program decreased 5.5 percent. If the mission of
    reducing cardiovascular diseases had been pursued with the vigor that
    these diseases deserve, considering their impact on society, there
    would have been an additional $303 million dollars in the Heart
    Program's research budget in 1996.
        This situation must be corrected. The AHA recommends that NHLBI's
    budget be doubled by the year 2002. To reach this funding goal, AHA
    recommends a fiscal year 1998 NHLBI appropriation of $1.65 billion,
    including $834 million for the Heart Program. Of the latter amount, AHA
    requests that $790 million be dedicated to supporting existing programs
    and $44 million be invested in the following promising research
    initiatives:
        Origins of atherosclerosis.--A heart attack is the end result of a
    disease process called atherosclerosis, in which a blood vessel to the
    heart becomes obstructed by deposits of cholesterol and other material.
    If the origins of these blockages were understood, many heart attacks
    possibly could be prevented. Scientists know that blockages begin when
    the inside wall of a blood vessel is injured by too-high levels of
    ``bad'' cholesterol in the blood, high blood pressure and other factors
    (possibly including defective genes) that are not yet understood. The
    injury ignites an inflammatory process that over time creates scar
    tissue in the vessel wall. Ultimately, the scar tissue can rupture,
    creating the blood clot that can obstruct blood flow to the heart and
    cause a heart attack. More research is needed to understand the nature
    of the blood vessel wall, the role of genes in influencing the reaction
    of the blood vessel to cholesterol and how the vessel's inflammatory
    response to injury can be controlled.
        Congestive heart failure.--Five million Americans suffer from
    congestive heart failure, the single most frequent cause of
    hospitalization for those age 65 and older. In the past 16 years, the
    number of hospitalizations for congestive heart failure has more than
    doubled. More research is needed to understand how and why the disease
    occurs and how it can best be treated and prevented. Among the several
    promising treatments that the AHA believes deserve to be evaluated
    include: surgical techniques to remove dilated and non-functioning
    heart muscle; left ventricular assist devices, regarded as possible
    bridges to and even substitutes for a transplanted heart; and use of
    animal hearts for transplant. Another exciting treatment needing
    additional study would transplant healthy heart cells from a donor onto
    the failing heart of the person with congestive heart failure.
        Heart disease in infants and youth.--Prevention and treatment of
    heart diseases present at birth depend on improving scientific
    knowledge about how the heart develops from the embryonic stage. Many
    different types of cells must work together if the heart is to develop
    normally. The heart diseases that afflict infants and young children
    occur when these different cells do not work together. Scientists
    believe that this occurs because the hereditary material--the genes--of
    these cells are defective. Researchers have already identified the
    sites on human chromosomes related to certain heart defects. They are
    also trying to pinpoint the genes responsible for the defects. However,
    much research is needed to understand these chromosome sites and to
    locate other sites responsible for other heart diseases. After specific
    genes involved in congenital heart defects are identified, more
    effective prevention and treatment of this nation's most common birth
    defect should be possible.
        A healthy lifestyle.--Most Americans know that smoking, physical
    inactivity and being overweight are unhealthy. Why then are more
    teenagers smoking cigarettes, more people overweight, and less than 25
    percent of the population physically active? The answer is that
    awareness of healthy--or unhealthy--behaviors such as smoking does not
    always translate into healthy actions. Research is needed on behavioral
    modification and long-term compliance if we are to have effective
    educational and public health approaches that change people's behavior.
    Also needed is more research about the role of nutrition in preventing
    heart attack, stroke and other cardiovascular diseases. There are many
    unanswered questions about the heart-healthy benefits of a diet that is
    high in fish oils, polyunsaturated fat, or dietary antioxidants such as
    vitamins E and C and low in trans fatty acids. Because a healthy diet
    is an anti-heart disease and anti-stroke diet, findings from this
    research will affect the entire population.
    National Institute of Neurological Disorders and Stroke:
        Stroke is the main cause of permanent disability in this country
    and America's number three killer. Death rates from stroke have
    declined for many decades, but a 10 percent increase in stroke deaths
    occurred in a recent three-year period (from 1992 to 1995). This news
    comes at a time when opportunities to improve the treatment of stroke--
    to reduce death and disability of stroke--have never been greater.
    Thus, the AHA recommends doubling of the NINDS stroke research budget
    by the year 2002. A fiscal year 1998 appropriation of $93 million for
    stroke, the first increment toward this goal, will allow NINDS to make
    more rapid progress toward the ``Decade of the Brain'' goal of
    ``prevention of 80 percent of strokes and protection of the brain
    during acute stroke'' by expanding and initiating programs to:
      --develop functional neuroimaging capabilities to allow non-invasive
            diagnosis, treatment assessment and prediction of functional
            recovery following stroke;
      --investigate mechanisms responsible for the death of cells during a
            stroke and evaluate the safety and effectiveness of agents to
            protect brain tissue from damage during a stroke;
      --explore whether stroke can be prevented by reducing blood levels of
            cholesterol, through drugs and/or diet;
      --study the interactions of various brain cells and the molecules on
            the cells during reduced blood flow to a brain area, which
            occurs during stroke, and when blood flow has been restored as
            a result of treatment. Information from such research would
            contribute to the development of treatments to protect brain
            tissue from damage and to improve survival;
      --promote research on the molecular mechanisms of the natural barrier
            in the brain that separates brain tissue from the blood supply,
            in order to gain better understanding of how areas of the brain
            affected by stroke interact with the nutrients and cellular
            elements as well as therapeutic agents;
      --identify brain-specific mechanisms that may predispose an
            individual to a stroke or lessen, or increase, the impact of
            risk factors on susceptibility to stroke;
      --create programs combining epidemiology, long-term prevention and
            clinical trials to decrease stroke impact;
      --continue identifying and evaluating promising treatments to prevent
            or treat stroke and develop strategies and systems to promote
            clinical testing of these experimental treatments in a wide
            range of medical settings in which they may be used;
      --advance basic research on mechanisms in acute strokes, based on
            results from clinical studies and trials; and,
      --develop programs for more effective diagnosis and treatment of
            dementia caused by stroke.
    Other NIH institutes and centers of interest
        National Center for Research Resources help institutions and
    researchers obtain and provide humane care for animals. An fiscal year
    1998 appropriation of $477.4 million will fortify animal research,
    correct deficiencies in research animal resources and fortify
    nationwide Clinical Research Area Centers and Biomedical Technology and
    Infrastructure Areas.
        National Institute on Aging research defines mechanisms by which
    aging processes contribute to cardiovascular diseases, a main cause of
    disability and number one killer of older Americans. An fiscal year
    1998 appropriation of $33.35 million for NIA cardiovascular research
    will allow continuation of on-going studies and expansion into
    innovative, promising areas.
        National Institute of Diabetes and Digestive and Kidney Diseases
    research helps reduce death and disability from cardiovascular
    diseases. A very high percentage of diabetes and kidney disease
    sufferers develop or die from heart or blood vessel diseases. The AHA
    advocates an fiscal year 1998 appropriation of $938 million for NIDDK.
        National Institute of Nursing Research studies play an instrumental
    role in biobehavioral aspects of health. Interventions to promote self-
    care and patient education are a large part of the portfolio. NINR-
    supported research is critical to primary and secondary prevention of
    heart attack, stroke and other cardiovascular diseases. The AHA
    advocates an fiscal year 1998 appropriation of $68.7 million for NINR
    research.
    Centers for Disease Control and Prevention
        The AHA supports a fiscal year 1998 appropriation of $3 billion for
    CDC as a whole. CDC programs are essential to reducing risk factors for
    heart disease, stroke and other diseases. A proposed CDC activity,
    about which the AHA is enthusiastic, is a national cardiovascular
    disease prevention program that would assist the states in implementing
    innovative strategies promoting heart-healthy behaviors with special
    emphasis on populations that are undeserved and are at high risk. AHA
    recommends $10 million for this program.
        Particularly because of the increase in obesity and physical
    inactivity among Americans, the AHA applauds the CDC's proposal to
    build a comprehensive program of physical activity and nutrition
    promotion to reach children, adolescence and adults throughout the
    country. AHA recommends $15 million for this program.
        In the preventive health and health services block grant,
    established to meet the nation's objectives for Healthy People 2000 for
    health education and risk reduction, the AHA recommends that increased
    funds be provided to insure that states that receive the grants obtain
    maximum return on the dollars. Additional moneys will enable states to
    target several of the health goals cited in Healthy People 2000. AHA
    recommends $210.5 million for this program.
        The tobacco use program is administered by the CDC's Office on
    Smoking and Health, a national leader in the nation's efforts to
    prevent and reduce the use of tobacco and to protect nonsmokers. In
    conjunction with the FDA, National Cancer Institute and nonprofit
    organizations such as AHA, this office plans to develop a national
    public education campaign to reduce access to and appeal of tobacco
    products among young people--a very worthwhile program since daily
    about 3,000 young Americans become regular smokers, creating about one
    million new smokers a year. At least one in three of these new smokers
    will die later in life as a result of tobacco use. CDC also proposes to
    develop a smoking and volatiles lab to analyze cigarette ingredients,
    tar and nicotine and the presence of tobacco attributed carcinogens in
    humans. AHA recommends $36 million for this program.
        The adolescent health program currently funded 13 states to
    implement a comprehensive school health education program to provide
    youth with the information and skills needed to avoid risk behaviors.
    AHA wants more states to be funded with the necessary resources to
    battle tobacco use, poor nutrition and physical activity. AHA
    recognizes this as a worthy investment since every one dollar spent on
    health education saves 14 dollars in health care costs. AHA recommends
    $25 million for this program.
                                     ______

     Prepared Statement of Dr. Rodney Mead, Professor of Zoology, Director
                    of NIH IDeA Program, University of Idaho
        Mr. Chairman and members of the Subcommittee, thank you for the
    opportunity to submit this testimony regarding the National Institutes
    of Health's Institutional Development Award (IDeA) program. Allow me to
    express our deep appreciation for the support Senator Larry Craig has
    given to the NIH IDeA program, and the other EPSCoR programs that are
    so important to our state. Senator Craig has worked tirelessly for the
    state of Idaho, and we thank him for his efforts.
        Let me first give the subcommittee some background information.
    IDeA allows researchers and institutions in participating states to
    improve the quality of their research so they can compete for non-
    EPSCoR research funds. IDeA was authorized in the NIH Revitalization
    Act (Public Law 103-43) of 1993, which directed NIH to establish a
    program to enhance the competitiveness of biomedical researchers in
    states with historically low success rates.
        The IDeA program funds merit-based, peer reviewed research and
    works to enhance the competitiveness of research institutions. It
    increases the probability of long-term growth of regular NIH
    competitive funding in the NIH IDeA states. States that participate in
    IDeA include: Alaska, Arkansas, Delaware, Idaho, Kansas, Kentucky,
    Mississippi, Montana, Nebraska, New Mexico, North Dakota, Oklahoma,
    South Dakota, West Virginia, and Wyoming.
    The IDeA Program in Idaho
        The NIH IDeA program is designed to enhance the biomedical research
    capabilities of states that have not had a long history of NIH funding.
    Idaho has received two IDeA awards totaling $500,000, all of which has
    been matched dollar for dollar by the state of Idaho. The federal
    funding has been equally divided between the University of Idaho (UI)
    and Idaho State University (ISU), and has been used to upgrade the
    biomedical research infrastructure at both institutions.
        Money from the first award was used by both universities to create,
    equip and staff core molecular biology research laboratories. These
    core laboratories are designed to provide technical support, training
    and access to multi-user equipment that was not formerly available.
    These services are made available to all biomedical researchers on both
    campuses. At UI, the core molecular biology laboratory is staffed by a
    full time Ph.D., whose position is now permanently funded by state
    funds.
        The second award has been used to purchase a state of the art
    phosphoimaging system at UI. Money in years two and three of this award
    will be used to upgrade the core confocal microscope laboratory,
    thereby expanding the utility of this important multi-user instrument,
    and meeting the ever-changing needs of the research community. For
    example, this upgrade will permit UI faculty member Dr. Bruce Miller
    for the first time to use the new UV laser capabilities of this
    instrument in his studies of the molecular genetic mechanisms that
    integrate developmentally regulated, cell-specific gene expression with
    cell cycle regulation. WAMI faculty member Dr. Michael Laskowski also
    relies upon this instrument in his NIH funded studies of the growth and
    regeneration of mammalian nerves.
        Purchase of highly specialized animal cage units which permit the
    rearing of animals in a germ free environment will also expand the
    research capabilities of UI biomedical researchers. For example,
    acquisition of these cage units will allow UI faculty member Dr. Steven
    Austad to rear mice, used in his NIH funded aging studies, in a germ
    free environment and thus more adequately distinguish between disease
    and age-related declines in physical fitness that are associated with
    aging.
        These core research facilities are currently being used by
    biomedical researchers in the Departments of Biological Sciences,
    Animal Science, Food Science and Toxicology, Microbiology, Molecular
    Biology and Biochemistry, and by the Washington, Alaska, Montana, Idaho
    (WAMI) medical faculty at the University of Idaho. The core molecular
    biology laboratory at ISU is principally being used by biomedical
    researchers in the Department of Biological Sciences and the College of
    Pharmacy.
        The creation and enhancement of these research facilities have led
    to at least six important results. They have:
      --provided access and training in the proper use of expensive multi-
            user equipment that was not previously available. Use of this
            equipment has significantly reduced the amount of time required
            to acquire, analyze, graphically display data, and obtain
            publication quality images. This has increased the productivity
            of Idaho's biomedical research community such as Dr. Holly
            Wichman, who is making extensive use of the imaging system in
            obtaining preliminary data to be included in an NIH research
            grant regarding the evolution of viruses;
      --expanded the research capabilities of faculty and students by
            providing training in new and rapidly changing molecular
            biology technologies used in biomedical research. This has
            allowed faculty, students, and post-doctoral trainees to
            undertake research projects that were previously impossible due
            to inexperience with the new techniques required to investigate
            the complex biomedical problems that remain to be solved;
      --reduced the time required to establish these new techniques in
            investigators' laboratories and provided unlimited access to
            methodological trouble-shooting expertise that was formerly not
            available without impinging upon other researchers' time and
            goodwill;
      --enhanced the chances of Idaho's biomedical researchers of obtaining
            NIH research grants by providing them with increased technical
            capabilities and the opportunity to demonstrate their ability
            to use these new techniques by collecting preliminary data
            which are so vital in convincing grant reviewers that they have
            the facilities, technical expertise and actual ability to do
            what is proposed. For example, I obtained preliminary data
            which ultimately convinced an NIH panel to approve funding of a
            grant to investigate factors necessary for promoting changes in
            the uterine environment that may be essential for successful
            implantation of mammalian embryos;
      --enhanced the ability of UI and ISU faculty to provide state of the
            art training to future biomedical researchers. For example, one
            of our graduate students, Mr. John Eisses, obtained training
            and used equipment in the molecular biology laboratory
            extensively to complete his thesis dealing with molecular
            genetics; and,
      --resulted in Idaho universities being better able to compete for the
            brightest young biomedical researchers. For example, UI has
            just hired Dr. Deborah Stenkamp, who studies the developmental
            and molecular biology of color vision. She has just submitted
            an NIH grant application to continue her work in this area.
            Access to the confocal microscope and core molecular biology
            labs was an important factor in her decision to accept this
            position at UI.
    Conclusion
        As this subcommittee considers its priorities for fiscal year 1998,
    I encourage you to consider the importance of making sure all parts of
    the country are able to contribute to the important research mission of
    the NIH. I encourage the subcommittee to fund the IDeA program at the
    level of $12.6 million--$10 million over the budget request.
        Overall NIH funding grew by $2.4 billion from fiscal year 1993
    through fiscal year 1997. Funding for the National Center for Research
    Resources (NCRR) alone increased by nearly $103 million. As a strong
    supporter of biomedical research, I applaud these efforts, and I
    encourage this subcommittee to provide $12.6 million of these funds for
    the IDeA program.
        I would like to thank the subcommittee for the opportunity to
    submit this testimony for the record.
                                     ______

    Prepared Statement of Reed V. Tuckson, M.D., President, Charles R. Drew
    University, on Behalf of the Association of Minority Health Professions
                                    Schools
        Mr. Chairman and members of the Subcommittee, thank you for the
    opportunity to submit the views of the Association of Minority Health
    Professions Schools (AMHPS). I am Dr. Reed V. Tuckson, President of
    Charles R. Drew University of Medicine and Science, and president of
    the Association of Minority Health Professions Schools (AMHPS).
        AMHPS is an organization which represents twelve (12) historically
    black health professions schools in the country. Combined, our
    institutions have graduated 60 percent of all the nation's African-
    American pharmacists, 50 percent of African-American physicians and
    dentists, and 75 percent of the African-American veterinarians. Our
    twelve schools are becoming even more ethnically and culturally diverse
    in terms of Hispanic students and Native American students, and most of
    these students and graduates matriculate from and are working in the
    nation's underserved rural and inner-city communities.
        While African-Americans represent approximately 12 percent of the
    U.S. population, only 2-3 percent of the nation's health professions
    workforce is African-American. Studies have demonstrated that when
    African-Americans and other minorities are trained in the health
    professions, they are much more likely to serve in medically
    underserved areas, more likely to take care of other minorities and
    more likely to accept patients who are medicaid recipients or otherwise
    poor. For this reason, it is imperative that the federal commitment to
    training African-Americans and other minorities in the health
    professions be strong. Clearly, institutions which train
    disproportionately high numbers of minorities address a national need.
        In spite of our proven success in training minority health
    professionals, our institutions endure a financial struggle that is
    inherent in our missions to train disadvantaged individuals to serve in
    underserved areas. The financial plight of the majority of our students
    has affected our schools in numerous ways, such that we are not able to
    depend on tuition as a means by which to respond to the discontinuation
    of funding or other forms of federal support for health professionals
    education. Additionally, due to the fact that the patient populations
    served by the AMHPS institutions have historically been poor, our
    institutions have not earned money from the process of patient care at
    the time when the average medical school gets 40-50 percent of its
    revenue from patient care.
        As a nation, we must address the shocking and disturbing
    disparities in our health care system. In addition to a higher
    prevalence of violence and drug use, minority communities have a higher
    rate of infant mortality, cancer, emphysema, stroke, heart disease,
    aids, and other diseases. Many of the programs supported by your
    Subcommittee help our institutions meet these challenges head on. We
    are committed to face these issues, and your commitment to providing
    resources will be a vital component to our success.
                    specific key programs supported by amhps
    Health Professions/Disadvantaged Minority Training
        There have been several reports recently, including reports by the
    Pew Foundation, the Institute of Medicine, and the Council on Graduate
    Education, that predict a general over-supply of physicians and other
    health care providers. This is not the case among all health care
    providers--in fact the opposite is true. This nation needs many more
    minority physicians, dentists, pharmacists, veterinarians, and allied
    health professionals.
        The health professions programs supported by your Subcommittee are
    the only federal initiatives that are designed to deal with
    acknowledged shortages among diverse populations and in geographic
    areas.
        The Minority Centers of Excellence Initiative, the Health Career
    Opportunity Program and other health professions programs recognize and
    support the institutions that have a track record and existing mission
    and commitment to addressing those shortages. The support provided for
    the Centers of Excellence program, represents, very frankly, the
    difference between keeping the doors open or closed at several
    historically minority health professions schools. AMHPS is disappointed
    that the president's budget recommendation severely cuts health
    professions training. We urge the Subcommittee to restore fiscal year
    1998 funding to the current level of funding of $292 million. A funding
    level of $302 million would allow a modest increase for inflation.
    National Institutes of Health
        The historically minority institutions which I represent today are
    committed to narrowing the health status gap among minorities when
    compared to the general population. Our institutions can achieve this
    national goal by improving our research capabilities through continued
    development of our research labs, faculty improvement, and other
    learning resources.
        Almost every health professions training and research institution
    in this country was built and developed with a significant contribution
    from federal sources. At this stage in our development, we are prepared
    to accept this same kind of support.
        Three programs specifically address developing the research
    infrastructure at our institutions:
        The Research Centers at Minority Institutions program at the
    National Center for Research Resources (NCRR) is helping us develop the
    research capability to solve health problems disproportionately
    impacting minorities. Funding for this program should grow at the same
    rate as NIH overall.
        Secondly, the Extramural Facility Construction program at NCRR can
    help our schools catch up to our non-minority counterpart institutions
    by providing us the resources to build adequate research facilities.
    The subcommittee is urged to provide $30 million for fiscal year 1998
    for this program. We remain concerned about the administration of the
    program. The statute designates 25 percent of the funding for this
    program to ``Institutions of Emerging Excellence'', yet heretofore NCRR
    has not designated these funds properly.
        Third, the Minority Health Initiative and the Office of Research on
    Minority Health at NIH each support critical specific disease related
    research initiatives through the various NIH institutes. We recommend a
    combined funding level of $80 million for these programs in fiscal year
    1998.
    Centers for Disease Control
        Mr. Chairman, minority populations of all ethnic backgrounds are at
    significantly increased risk of infectious disease, low birth weight,
    Hepatitis B, sexually transmitted diseases, tuberculosis, and other
    chronic disorders.
        The Centers for Disease Control has taken a leadership role in
    combating these problems by supporting initiatives to control
    infectious and chronic diseases among disadvantaged minority
    populations through CDC's plan, ``Addressing Emerging Infectious
    Disease Threats: A Preventative Strategy for the United States''. With
    additional resources, CDC could begin to support community-based
    infectious disease prevention programs in each state.
        Because of the proximity of minority health professions
    institutions to disadvantaged, medically underserved communities, CDC
    can and does play a leadership role in supporting disease prevention
    and public health education activities in partnerships with our
    institutions.
        Our overall funding recommendation for CDC for fiscal year 1998 is
    $2.75 billion.
    Strengthening Historically Black Graduate Institutions/Higher Education
        The Strengthening Historically Black Graduate Institutions, Title
    III, Part B, Section 326 is a program of extreme importance to the
    AMHPS institutions. This program allows historically black graduate
    institutions, including those represented by AMHPS to participate in
    the part B programs for strengthening our schools. The funding from
    this program is utilized by our institutions to establish and
    strengthen development offices, to begin endowment development
    campaigns (a definite need of all HBCUs), and to enhance our
    educational capabilities on the graduate level.
        The Higher Education Act Reauthorization added eleven Historically
    Black Graduate and Professional Schools to Section 326 of Title III,
    making sixteen schools eligible for this funding. In order to
    accommodate these new schools at the minimum funding level and continue
    the progress being made at existing schools, increased funding is a
    necessity in the fiscal year 1998 appropriation for this program. A
    funding level of at least $20 million is necessary to accommodate each
    of the existing and the 11 new schools added during the
    reauthorization.
        In Closing: Mr. Chairman, please allow me to offer our sincere
    appreciation to you and the members of this subcommittee for the
    support they have provided for our institutions and their students.
    With congressionally funded programs for minority health and health
    professions education, we can overcome the disparity in health care in
    this country. We must be careful not to eliminate, paralyze or strangle
    the programs that have proven to work. There are success stories, but
    not enough of them. The lack of participation by minorities in medicine
    and the sciences is characteristic of a long-term, complex, multi-
    faceted set of variables which will require a sustained, vigorous, and
    visionary commitment from our high schools, colleges, medical schools,
    and support organizations--and from this Subcommittee and the entire
    Congress.
        For the record I am submitting: a set of funding recommendations
    for programs under the Subcommittee's jurisdiction; and a report from
    the 12 AMHPS schools on progress made by each institution with funding
    from the health professions programs.
        Once again, thank you for allowing our association the opportunity
    to submit our views.
                                     ______

        Prepared Statement of David White, M.D., President, and Barbara
      Phillips, M.D., Chairperson, Government Affairs and Public Policy,
                      American Sleep Disorders Association
        We are pleased to have the opportunity to submit testimony on
    behalf of the American Sleep Disorders Association (ASDA). A medical
    and scientific society, the ADA represents more than 2,800 physicians
    and researchers. Part of the ASDA's mission is to foster research in
    the field of sleep medicine and to educate both the public and health
    care professionals about sleep disorders. The ASDA appreciates this
    opportunity to present its comments on funding for sleep disorder's
    research and education within the National Institutes of Health (NIH)
    for fiscal year 1998.
        First of all, we would like to commend Chairman Specter and the
    Subcommittee for their leadership in working to support funding for the
    NIH for fiscal year 1997 at a substantial increase over the President's
    budget proposal.
        Thanks to the leadership of dedicated policy makers, the National
    Center for Sleep Disorders Research (NCSDR) was established in the 1993
    NIH Revitalization Act. The Center was the cornerstone recommendation
    of the National Commission on Sleep Disorders Research which was
    established in 1988 to address the growing concern over sleep disorders
    and their effect on our society. The Center is now part of the National
    Heart, Lung and Blood Institute (NHLBI) of the National Institutes of
    Health. During its first three years the development of the Center has
    progressed admirably due to Dr. Lenfant's leadership of the NHLBI. The
    ASDA continues to firmly support the National Center and believes, that
    with adequate support, the widespread consequences of untreated sleep
    disorders will be markedly reduced.
        A strong and fully funded National Center for Sleep Disorders
    Research is crucial to the health of our nation, as patients with sleep
    disorders suffer many accidents which often have dire consequences.
    Forty million American adults suffer from chronic sleep disorders, such
    as insomnia and sleep apnea; and another 20-30 million have
    intermittent sleep problems; millions more at any given time have not
    obtained sufficient sleep. The consequences of these sleep disorders
    and common sleep deprivation are not trivial. They include reduced
    productivity, lower performance in school, an increased likelihood of
    accidents (behind the wheel, on the job, and at home), increased
    cardiovascular disease, a higher mortality risk and decreased quality
    of life.
        More specifically, sleep-related motor vehicle accidents continue
    to take the lives of our citizens--young and old alike. These accidents
    come at great emotional and financial cost. The Appropriations
    Transportation Subcommittee recognized this problem and in its fiscal
    year 1996 and fiscal year 1997 budgets appropriated $1 million each
    year to the National Highway Traffic Safety Administration to conduct
    research, data collection and public awareness activities in
    collaboration with the National Center. It is not by chance that the
    number of alcohol-related motor vehicle accidents has declined over
    recent years; this change has occurred in conjunction with proactive
    measures to educate the public about the consequences of driving while
    intoxicated. The same must now be done about the hazards of driving
    while drowsy.
        The National Center has progressed measurably in its first three
    years. The Center's scientific advisory board was established and has
    held regular meetings. The Board includes representatives from various
    NIH Institutes and other federal government agencies including the
    Department of Transportation. The Education Subcommittee of the
    Advisory Board has developed a national public awareness and mass media
    campaign which is progressing adequately and includes print
    advertisements, radio and television public service announcements and
    patient and professional education materials.
        During the next fiscal year the ASDA hopes to have the support and
    collaboration of the National Heart, Lung and Blood Institute and the
    National Center, to establish ``High School 2000''. This program will
    educate our nation's youth about sleep disorders and the importance of
    sleep as part of a healthy life. The goals of the program are: to
    ensure that education on sleep and its disorders is a part of the
    health curriculum in all high schools in the United States; and to have
    sleep and its disorders described in all drivers' education manuals in
    all states. To implement the program, a national task force would be
    created. We hope to start a pilot program in two or three states in
    1997 and would then progress nationally based on the experience in the
    initial three states. It is important to note that designated funding
    would be needed to administer and carry out this program.
        The Research Subcommittee has developed the National Sleep
    Disorders Research Plan, which has been approved by NIH Director, Dr.
    Harold Varmus and has been endorsed by major organizations including
    the American Academy of Neurology, the American College of Cardiology,
    the American Thoracic Society, the Society for Neuroscience, the
    Alliance for Aging Research, the American Sleep Apnea Association and
    the Narcolepsy Network. The purpose of the plan is to map out
    opportunities and challenges that exist in sleep disorder's research
    and training. One objective of the plan is to formulate recommendations
    on how these challenges and opportunities can be pursued by the
    scientific field and by the NIH. Continued strong funding of NIH is
    needed to accomplish this agenda.
        In its first year the Center initiated a request for applications
    for a research project on the cardiopulmonary consequences of sleep
    apnea. In addition the Center introduced a cooperative multi-institute
    request for applications in general sleep research. Most recently, the
    Center introduced several sleep academic awards for fiscal year 1996/
    97. The objective of the awards is to ``encourage the development and/
    or improvement of the quality of medical curricula, physician/patient
    and community education, and clinical practice for the prevention,
    management, and control of sleep disorders.''
        A recent finding as a result of an NHLBI supported sleep research
    study indicate that sleep apnea, or periodic cessation of breathing
    during sleep, increases a driver's risk of automobile accidents. These
    results suggest that a significant fraction of motor vehicle accidents
    could be preventable through recognition and treatment of this common
    disorder.
        In its early stages one of the Center's main challenges, aside from
    funding, was the lack of opportunities to develop collaborative efforts
    with other NIH Institutes involved in sleep research. The legislation
    that established the Center authorized the Center to collaborate with
    the national Institutes of Neurology, Aging, Mental Health and Child
    Health. Due to the leadership of the Center, this collaboration is now
    taking place regularly with several Institutes and will continue to be
    a priority of the National Center.
        A more recent challenge facing the National Center lies in its
    public education efforts. As you know, the National Heart, Lung and
    Blood Institute, more than any other at NIH, supports well known and
    successful public education campaigns such as those for asthma, high
    blood pressure and hypertension. It is this same office that is
    carrying out the national sleep disorder's public awareness campaign.
    Due to Congress' efforts to reduce administrative costs and its freeze
    of the Research, Management and Support (RMS) budgets of the
    Institutes, the NHLBI has had to seriously curtail its public education
    efforts. The funds for these efforts come from the RMS budget line.
    This is an issue that must be addressed in order for the NHLBI to be
    able to carry on with its important public education work relative to
    sleep.
        The ASDA recommends funding for the National Institutes of Health
    for fiscal year 1998 at $13.89 billion and the National Heart, Lung and
    Blood Institute at $1.56 billion, a 9 percent increase for each.
    Notwithstanding this specific recommendation, it is very critical that
    NHLBI receives a funding increase that is at least proportionate to the
    overall increase for NIH.
        The ASDA commends the National Heart, Lung and Blood Institute for
    its leadership and the National Center on Sleep Disorders Research on
    its progress and thanks the Chairman of this subcommittee for his
    dedication and leadership by insuring the establishment and funding of
    the National Center.
        We appreciate the opportunity to submit testimony, and more
    important, for your continued commitment to helping the millions of
    Americans who suffer from sleep disorders and the millions more who
    have been or may be the victims of sleep-related accidents.
                                     ______

    Prepared Statement of Suzanne Rosenthal, President Emeritus, and Nancy
         Norton, Chairman, of the Digestive Disease National Coalition
        Mr. Chairman and members of the subcommittee, thank you for the
    opportunity to discuss the federal government's support of digestive
    disease research and education programs conducted through the National
    Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and
    the Centers for Disease Control and Prevention (CDC).
        The Digestive Disease National Coalition (DDNC) is comprised of 22
    voluntary and professional organizations concerned with the many
    diseases of the digestive tract. Founded in 1978, the DDNC has as its
    goal a desire to improve the health and quality of life for millions of
    Americans suffering from both acute and chronic digestive diseases.
    Digestive diseases include such disorders as inflammatory bowel
    disease, irritable bowel syndrome, ulcers, colorectal cancer, and
    hepatitis.
        The social and economic impact of digestive diseases is enormous.
    Twenty million Americans are treated for a chronic digestive disease
    each year and disorders of the digestive system consistently rank among
    the leading causes of hospitalization, surgery, and disability in the
    U.S. In addition, an estimated 200,000 people miss work each day
    because of digestive problems, resulting in costs of approximately $70
    billion a year in lost wages, reduced productivity, health care
    expenditures, and disability payments.
        Mr. Chairman, we have two major points that we hope to convey to
    the subcommittee on behalf of the digestive disease community:
        Millions of Americans around the country who suffer from a variety
    of digestive disorders are pinning their hopes for a better life--or
    even life itself--on medical advances made through research supported
    by the National Institute of Diabetes and Digestive and Kidney
    Diseases. For that reason, the DDNC recommends a 9 percent increase in
    NIDDK's budget for fiscal year 1998 (an increase of $73 million over
    fiscal year 1997), bringing NIDDK's total appropriation to
    $889,420,380.
        The DDNC strongly believes that if patients suffering from
    digestive diseases are to receive the highest quality care available
    then NIDDK must practice and emphasize a balanced approach to
    biomedical research. Specifically, the DDNC endorses a research
    approach that aims to both unmask the mysteries of digestive diseases
    at the cellular and molecular level and transfer those discoveries to
    the bedside of digestive disease patients in the form of improved
    treatment and care.
        One group of patients who would benefit from a more balanced
    research approach are those suffering from viral hepatitis. More than 5
    million Americans are infected with chronic hepatitis B or chronic
    hepatitis C and overall 165,000 new cases are reported each year.
    Because chronic infections can result in severe liver impairment/
    cirrohsis, liver transplantation (at a cost of approximately $250,000
    per patient) often becomes the only treatment option available for many
    individuals. Already, chronic hepatitis C accounts for nearly one third
    of all liver transplants being performed in the United States. It is
    estimated that there are up to 8,000 deaths annually due to hepatitis C
    and the CDC projects that this number may more than triple by the year
    2010.
        The DDNC believes that research efforts should be directed toward
    gaining an understanding of the natural history of hepatitis and
    defining the pathogenetic mechanisms of hepatic viral infections.
    Currently, treatment of chronic hepatitis B provides a sustained
    response in about 30 percent of patients compared with 15 percent of
    patients with chronic hepatitis C. Although significant research is
    occurring in the area of anti-viral therapy, we believe more emphasis
    needs to be placed on developing effective vaccines and treatment
    therapies.
        A second group of patients who would benefit from more targeted
    research are those suffering from Inflammatory Bowel Disease (IBD). IBD
    represents two diseases--distinct yet quite similar in clinical
    presentation and symptoms--ulcerative colitis and Crohn's disease.
    Combined these disorders represent the major cause of morbidity from
    chronic intestinal illness. While the exact pathogenesis of IBD is
    poorly understood, scientific evidence has shown that interactions
    between the immune system, genetic susceptibility and the environment
    are strongly implicated.
        In recent years, unprecedented developments in molecular biology
    have permitted the creation of a new class of rodent models that more
    closely resemble IBD in humans. These techniques now make it possible
    to over express or delete selected genes in rodents. Applications of
    these genetically engineered rodents may provide clues to a better
    understanding of the pathways which control the chronic inflammation
    that occurs in IBD. Further studies are needed in these animal models
    to determine how current pharmacologic agents are used to treat IBD. In
    addition, these rodents may prove to be useful in applying novel
    immunologic treatment approaches such as gene therapy.
        In addition to viral hepatitis and Inflammatory Bowel Disease, the
    DDNC has long focused on the importance of research related to
    functional gastrointestinal disorders. These disorders include such
    conditions as Irritable Bowel Syndrome (IBS) and fecal incontinence.
        Irritable Bowel Syndrome is a chronic complex of disorders that
    malign the digestive system affecting 10-15 percent of the general
    population annually. These disorders strike people from all walks of
    life and result in a significant toll of human suffering and
    disability. IBS is one of the most common GI disorders yet people are
    very isolated by their condition. In a recent U.S. Householder Survey
    of Functional Gastrointestinal Disorders, Prevalence, Sociodemography
    and Health Impact, Irritable Bowel Syndrome accounted for 10 percent of
    the total gastrointestinal disorders population, 46 percent of which
    required the supervision of a gastroenterologist. This care alone
    results in millions of dollars in health care costs every year. In
    addition, individuals who suffer from IBS will miss 13.4 days of work
    annually as opposed to the 4.9 national average, further contributing
    to higher health care costs and loss of productivity. IBS alone has
    recently been called a multi-billion dollar problem by the
    gastrointestinal community. Much more can be done and should be done to
    address the needs of the millions of Americans suffering from IBS.
        Mr. Chairman, besides being strong advocates for research, the
    Digestive Disease National Coalition is also very active in supporting
    public education activities with respect to digestive disorders. We are
    currently working very closely with the Centers for Disease Control and
    Prevention to help implement CDC's new colorectal cancer screening
    public education initiative. Colorectal cancer is the third most
    commonly diagnosed cancer for both men and women in the United States
    and the second leading cause of cancer related deaths. Although
    survival rates are greatly enhanced when the cancer is treated at an
    early stage, recent studies have shown a tremendous need to: inform the
    public about the availability and advisability of screening; and
    educate health care providers with respect to colorectal cancer
    screening guidelines. CDC's education and awareness program has begun
    to address these needs by coordinating with national partners like the
    DDNC to develop an information program emphasizing the value of early
    detection. We encourage the subcommittee to provide CDC with $5 million
    in fiscal year 1998 (an increase of $2.5 million over fiscal year 1997)
    for this vital campaign.
        Once again, Mr. Chairman, thank you very much for allowing us to
    present the views of the Digestive Disease National Coalition. If you
    have any questions regarding our testimony or the research/education
    priorities of the digestive disease community please do not hesitate to
    contact us.
                                     ______

    Prepared Statement of Rosalie Lewis, Vice President of Development, and
               Daniel Lewis, Dystonia Medical Research Foundation
        I am Rosalie Lewis, Vice President of Development of the Dystonia
    Medical Research Foundation. It is my pleasure to submit testimony to
    the Subcommittee on behalf of the Foundation.
        First and foremost I would like to thank this subcommittee for its
    generous funding of the National Institutes of Health in its fiscal
    year 1997 appropriations bill. The Foundation is aware of the
    tremendous fiscal constraints under which you were working and we are
    extremely appreciative of your continued commitment and support of
    biomedical research.
        I have been formally involved with the Foundation since 1989, but
    on a more personal level I have been dealing with dystonia since 1985
    when the first of the three of our four children with dystonia was
    diagnosed. In fact, I had hoped that my 19 year-old son Benjamin could
    have joined me today in speaking with you about dystonia. However,
    dystonia has not only robbed him of the ability to walk unaided, or to
    use his hands for any fine motor coordination like writing, but now has
    made speaking most difficult. Like Benjy, my son Dan--now 16--also
    first exhibited symptoms of this disorder at age 7. Dan can tell you
    about dystonia first hand--what it is like to live a life filled with
    frustrations and unanticipated change. In fact, the only thing
    predictable about dystonia is its unpredictability.
        Daniel and I would like to tell you a little something about
    dystonia and why we, and the estimated 300,000 other children and
    adults, need your help so urgently.
        Dystonia is a neurological disorder characterized by severe
    involuntary muscle contractions and sustained postures. There are
    several different types of dystonia, such as: generalized dystonia
    which afflicts many parts of the body and usually begin in childhood
    (my sons Benjamin and Daniel have generalized dystonia); focal
    dystonias affecting one specific part of the body such as the eyelids,
    vocal cords, neck, arms, hands or feet (my son Aaron has a focal
    dystonia of the hand); and secondary dystonia which is secondary to
    injury or other brain illness.
        There is no definitive test for dystonia and many primary care
    doctors have never seen a case of it. This fact coupled with its varied
    presentations make it difficult to correctly diagnose. It is estimated
    that 85 percent of those suffering from dystonia are not diagnosed or
    have been misdiagnosed.
        In primary, uncomplicated dystonia, there is no alteration of
    consciousness, sensation, or intellectual function. Treatment for
    dystonia has met with limited and variable success with drug therapy,
    botulinum toxin injections, and several types of surgery. My children
    with generalized dystonia take huge doses of drugs which makes
    cognition difficult. But with a choice between walking and not walking,
    one may choose to tolerate drug side effects. Ben receives injections
    of botulinum toxin (botox) into the abductor muscles of his vocal
    cords, and he is experiencing moderate improvement.
        I am proud to be involved with the Dystonia Medical Research
    Foundation, founded just 21 years ago and since 1993 a membership-
    driven organization.
        The goals of the Foundation have remained the same: to advance
    research into the causes of and treatments for dystonia; to build
    awareness of dystonia in the medical and the lay communities; and to
    sponsor patient and family support groups and programs.
    To Advance Research
        Since 1977 the Foundation has awarded over 275 medical research
    grants totaling over $14 million dollars. Among the most significant
    results of this research was the discovery in 1989 of a genetic marker
    for dystonia and in 1995 of the gene for the dopa-responsive form of
    dystonia. We expect to have another gene announcement this June. In
    addition, several drug therapies have been developed including the use
    of Botulinum Toxin, Baclofen, and Artane.
        In 1981 the Foundation established three centers for dystonia
    research in New York, Vancouver, and London and still finances its
    ``flagship'' center at Columbia Presbyterian Medical Center in New
    York.
    To Build Awareness
        It is the goal of the Foundation to educate the lay and medical
    audiences about dystonia so that people afflicted with the confusing
    symptoms need not go undiagnosed or misdiagnosed as is so common.
        The New York dystonia research center, which I mentioned earlier,
    is designed as a teaching center as well as a research and treatment
    institution. Thereby, residents and fellows have the unique opportunity
    to learn about both the clinical and research aspects of dystonia.
        The Foundation conducts medical workshops and regional symposiums
    during which comprehensive medical and research data on dystonia is
    presented, discussed, and then disseminated. In October, 1996 the
    National Institutes of Health (NIH) was one of our co-sponsors for an
    international medical symposium with 60 papers on dystonia and 125
    representatives from 24 countries.
        Over 3,000 medical videos have been distributed since 1995 to
    hospitals and medical and nursing schools and at medical conventions.
    In addition, media awareness is conducted throughout the year but most
    especially during Dystonia Awareness Week observed nationwide this year
    from October 12th through the 18th.
    To Sponsor Patient and Family Support Groups
        The Foundation has more than 200 chapters, support groups and area
    contacts across the United States and Canada. We have eight regional
    coordinators and leaders in each region representing awareness,
    children's advocacy, extension, medical education, development, and
    symposiums.
        Patient symposiums are held regionally in order to provide the
    latest information to dystonia patients or others who are interested in
    the disease. In fact, in 1995 we held nine regional symposiums to
    attract, educate and inform more people about dystonia. Attending were
    over one thousand people, more than 35 doctors and nine grant holders
    who were speakers on dystonia. In 1997 we are conducting at least five
    more. Our most recent international patient symposium was held on May
    24-26, 1996 in New York City, and was a tremendous success with 350 in
    attendance.
    The National Institutes of Health and Dystonia
        As mentioned, In October of 1996 we conducted a major medical
    symposium with support of the National Institute of Neurological
    Disorders and Stroke (NINDS) and we expect to conduct one on genetics
    in 1997. In February 1993 the Dystonia Foundation co-sponsored with the
    National Institute on Neurological Disorders and Stroke an
    international workshop to bring together basic and clinical
    investigators. The purpose of the workshop was to identify advances.
    Some conclusions reached as a result of the workshop according to the
    workshop summary were that ``a greater interaction is needed among
    researchers from different scientific disciplines; carefully collected
    epidemiological information on the dystonia subtypes would provide a
    greater recognition not only of the prevalence of the dystonias but may
    promote an understanding of the environmental factors that result in
    clinical expression; and that it should be possible in the near future
    to further refine the classification of dystonias based on genetic
    patterns and clinical patterns correlated with age of onset and
    anatomical sites of involvement. NINDS encourages these ongoing
    research efforts towards the elucidation, treatment and eventual
    prevention of the various subtypes within the clinical spectrum of
    dystonia.''
        As you probably are aware, it can be extremely difficult for young
    scientists to break into the NIH grant system. The Dystonia Foundation
    believes that NINDS should focus even more on extramural dystonia
    research and would like to encourage creative collaborative efforts.
        The Dystonia Medical Research Foundation recommends that the
    National Institutes of Health, the National Institute on Neurological
    Disorders and Stroke, and the National Institute on Deafness and other
    Communication Disorders be funded for fiscal year 1998 at a 9 percent
    increase over fiscal year 1997. Because dystonia affects Americans six
    times more than most other better known disorders such as Huntington's,
    Muscular Dystrophy, and ALS, we ask that NINDS fund dystonia-specific
    extramural research at the same level it supports research in those
    other neurological diseases.
        With the proper dedication of resources, we believe that more
    treatments and a cure can be developed that will help my three boys--
    Aaron, Benjamin, and Daniel, and thousands of others.
        I would like to emphasize that we are clearly at a point of
    understanding the genetic causes of this disorder. We believe with
    increased NIH funding of research by NINDS and with the Foundation
    grants, we will celebrate together the discoveries.
        Thank you for the opportunity to submit testimony to the
    Subcommittee on behalf of the Dystonia Medical Research Foundation.
                                     ______

         Prepared Statement of Carol Ann Demaret, Board Member, Immune
                             Deficiency Foundation
        Mr. Chairman and members of the subcommittee, as a part of this
    process, you will be receiving declarations from experts who will
    define how close we are to medical breakthroughs in correcting faulty
    immune systems---and how much it will cost to reach this wellborn goal.
        I can't speak with their authority and precision on these matters.
    But I can speak of the wrenching human needs, and hopes, and failures
    and successes.
        I was told you need to know--and feel--these details, too.
        You may have heard of my beloved son, David. The world knew him as
    ``The Bubble Boy,'' because he was born into a bubble to shield him
    against the airborne sea of germs and viruses that most of us can
    counteract, most of the time, with the natural system of self-defense
    called the immune system. Because of a genetic defect, David was born
    without any sort of an immune system, not even a weak one.
        The problem is called Severe Combined Immune Deficiency, and bears
    the fearsome acronym pronounced SCID. It comes in many intensities, for
    many reasons.
        David lived, and flourished, in a bubble, at home, while the
    doctors and scientists labored in their laboratories to find ways by
    which they might cause him to develop an immune system.
        If they could help David, scientists knew, they could help the
    thousands of people with deficient systems who live so precariously in
    our world, those who always seem to be ill from something, and the
    children who otherwise would be doomed to death within a few months.
        Science is, after all, the organization of facts---and before
    David' s long survival there were precious few facts to work with.
        We lived quietly, as normally as possible. I fed my baby in that
    bubble, handling him through a glove system designed for moon rocks,
    and changed his diapers, and hugged him, and felt his warmth through
    the soft plastic walls, and helped him learn to walk, and talk, and
    learn, and grow, and have a spiritual sense. And he did all those
    things, my cheerful, gallant son with the black hair and dark eyes that
    seemed to see things beyond the reach of the rest of us. For many years
    I yearned to kiss him, and feel his skin without the heavy plastic and
    thick black gloves, and hear his voice without the muffling barrier
    that had to be between us.
        He waited patiently, with dignity, mostly without complaint, and
    looked out his window at the stars, and hoped someday to learn what it
    would feel like to walk barefoot in the grass.
        When he was twelve years old, David and his caregivers decided that
    there was a very good chance that enough had been learned to treat him
    and free him from his bubbles. But something went amiss. It didn't
    work. The story didn't end as everyone had prayed. My David died.
        A few hours before he went away, he was freed from the bubble, and
    I did get to kiss and hold him and hear him speak so lovingly of so
    many.
        Every parent who has lost a child prays that their short lives must
    meant something to the world. And they do.
        In world-affecting ways my manchild has continued to live on--in
    spirit and silent research.
        Of greatest and most far-reaching importance, we are told, is that
    through his valiant life and death my son David has enabled science to
    learn enough to help thousands of other children, and adults. As
    progress continues to be made on the guidance he bravely helped form,
    understanding the immune system, and how to manipulate it, will help to
    lead to many cures, of many ills. AIDS, for instance, acquired immune
    deficiency, is estimated to affect 40 million people in the world by
    the year 2000. And no more children will ever go into bubbles. From
    what was learned from my son immune systems can now be stirred into
    more vigorous action, even created within the womb before the child is
    born.
        A few days ago I was profoundly touched by meeting scores of
    parents and children who had gathered in Bethesda at the behest of the
    National Institutes of Health to share their problems and methods of
    coping, and success stories. They came from all over the nation. I even
    met people from Norway, who wanted to pass along their gratitude to my
    son, and to this nation.
        Wide applications of what was learned, however, has only begun.
    More must be learned and applied. It takes money, and I appeal to you
    to grant everything that can be sensibly spent in this valorous effort.
        My kiss to David was a private, mother's gesture of love, and
    grief, and farewell.
        But in a very real sense---you are empowered to bestow the kiss of
    life. Mr. Chairman, the Immune Deficiency Foundation recommends a 9
    percent increase for the National Institute of Allergy and Infectious
    Diseases in fiscal year 1998.
                                     ______

       Prepared Statement of Roger Guard, Director, Academic Information
     Technology and Libraries, University of Cincinnati Medical Center, on
       behalf of the Medical Library Association and the Association of
                       Academic Health Sciences Libraries
        Mr. Chairman and members of the subcommittee, I am Roger Guard,
    Director of Academic Information Technology and Libraries at the
    University of Cincinnati Medical Center. I am pleased to submit
    testimony on behalf of the Medical Library Association (MLA) and the
    Association of Academic Health Sciences Libraries (AAHSL) in support of
    increased fiscal year 1998 funding for the National Library of Medicine
    (NLM) with particular emphasis on funding for NLM's basic services/
    personnel, and outreach activities.
        MLA is a professional organization representing over 4,000
    individuals and 1,200 institutions involved in the management and
    dissemination of biomedical information to support patient care,
    education and research. AAHSL is composed of the directors of libraries
    of 142 accredited U.S. and Canadian medical schools belonging to the
    Association of American Medical Colleges. Together, MLA and AAHSL
    address health information issues and legislative matters of importance
    to both organizations and the NLM. The common goal of our organizations
    is to ensure that biomedical information is made available to health
    sciences libraries and is accessible to health care professionals,
    scientists, students and patients throughout the nation.
        Mr. Chairman, members of the MLA/AAHSL Legislative Task Force were
    present on March 5th when Dr. Donald Lindberg, director of the National
    Library of Medicine, testified before Congressman Porter's L-HHS House
    subcommittee. To a person, we were impressed with Dr. Lindberg's
    remarks on the tremendous progress NLM has made in the areas of
    information communications, the Visible Human Project, and
    telemedicine. MLA and AAHSL fully support these important initiatives
    and hope to work with NLM to enhance these programs as we enter the
    next century. In the interest of time Mr. Chairman, I will not restate
    the many successes of the Library over the past year as detailed by Dr.
    Lindberg. However, I would like to touch on a few areas of particular
    interest to the medical library community.
    NLM Basic Services & Personnel
        Basic library services must still be the foundation for NLM's long
    term success as a service agency. However, the lack of sufficient staff
    to perform these services is a major problem. The demand for basic NLM
    services is increasing at a rate of 10 to 15 percent per year.
    Maintaining the current standard of acquisitions, indexing, cataloging,
    database searching, and lending will become more and more difficult, if
    not impossible, if NLM staffing levels and fiscal resources continue to
    decline. In addition, NLM's resources have been stretched in recent
    years by the establishment of two major new congressionally mandated
    programs--the National Center for Biotechnology Information and the
    National Information Center on Health Services Research and Health Care
    Technology. As a result, we urge the subcommittee to consider
    reinstituting staff level positions, and the necessary financial
    support for them, so that NLM can meet its increasing service needs and
    insure that the quality of its programs and information services is not
    compromised.
        One of NLM's basic programs that has proven to be extremely
    beneficial to health care providers and patients is MEDLINE. Simply
    stated, MEDLINE is the world's premier biomedical information resource.
    In southern Ohio, northern Kentucky and southeastern Indiana, the
    University of Cincinnati Medical Center and over 35 public and private
    partners provide consumer access to high quality health information via
    the World Wide Web. Although this demonstration project, called
    NetWellness, was seeded by a U.S. Department of Commerce matching
    grant, NLM's MEDLINE remains the core information resources desired by
    NetWellness users. We have learned that MEDLINE is nearly as important
    to consumers as it is to health professionals.
    Outreach Programs
        NLM's Outreach programs are of particular interest to our
    organizations. These activities, designed to bring the most current
    medical information to a variety of health professionals, have proven
    to be very successful in improving the quality of our nation's health
    care. In 1991, a major medical journal published an article in which
    physicians reported positive changes in their diagnosis, choice of
    tests and drugs, length of hospital stay and advice given to patients
    as a result of information provided by medical librarians [Robert J.
    Joynt, Joanne G. Marshall, Lucretia McClure. ``Financial Threats to
    Hospital Libraries.'' JAMA. Sept.4, 1991 226 (9):1219-20]. In addition
    to these changes, physicians reported a reduction in mortality,
    hospital admissions, surgery, and hospital-acquired infections, due to
    data obtained from medical libraries.
        In the five years between 1989 and 1994, NLM has undertaken and
    supported close to 275 outreach projects, involving over 500
    institutions across the country. In conjunction with the eight Regional
    Medical Libraries and the members of the National Network of Libraries
    of Medicine, over 20,000 health professionals across the country have
    learned more about accessing the medical information resources that NLM
    provides. Outreach programs have been geared toward individual health
    professionals practicing in under served geographic regions,
    unaffiliated health professionals, health professionals serving
    minority populations, and care givers and patients who need vital HIV/
    AIDS information.
        Clearly, NLM has been able to accomplish a great deal through its
    outreach activities. However, there are still far too many health care
    professionals throughout the country who are not aware that NLM and the
    NN/LM exist and work together to provide access to the most up-to-date
    medical information. Mr. Chairman, outreach will not be complete until
    every health professional in this country is familiar with NLM and the
    information resources it provides. Similarly, the nation's medical
    library community believes with the advent of the World Wide Web there
    is now a greater opportunity to not only reach out to health care
    professionals but to the U.S. citizenry at large through greater access
    to NLM's data bases.
    High Performance Computing and Communications
        The dissemination of information and the quality of NLM's outreach
    programs have been greatly enhanced by the High Performance Computing
    and Communications (HPCC) program. The NLM, the National Science
    Foundation (NSF) and other agencies are working together to connect
    hospitals and other biomedical institutions to the Internet. The High
    Performance Computing and Communications Act passed by the 102nd
    Congress legislated the establishment of a national information highway
    designed to provide health care practitioners and patients with greater
    access to the world's medical literature. As a result, health
    professionals with access to the Internet, can from their offices,
    homes, or bedsides access information such as recently published
    literature, current clinical trials, toxicologic data, and consumer
    health information. In addition, HPCC technology is providing
    researchers with the high speed computing power necessary to create
    complex biomedical models and allowing scientists in different areas of
    the country to work together on intricate research projects.
        Mr. Chairman and members of the subcommittee, the information age
    is well underway. The National Library of Medicine, through its High
    Performance Computing and Communications efforts and its expertise in
    providing medical information on the Internet, is the critical
    investment agency for improving access to health care information in
    medically under served areas. We in the health sciences library
    community applaud the Congress for having the foresight to provide NLM
    with the resources to support telemedicine and test bed network
    projects. There is no question that these technologies will have a
    profound influence on future health care in this country. It is
    critical that Congress provide adequate funding to NLM for the HPCC
    program and the Next Generation Internet initiative in fiscal year 1998
    in order to capitalize on numerous opportunities which hold great
    promise for improving the delivery of health care to millions of
    Americans.
    Fiscal Year 1998 Recommendation
        The landmark 1989 NLM Outreach Panel study chaired by Dr. Michael
    DeBakey recommended a doubling of the National Library of Medicine's
    budget to take full advantage of outreach and HPCC opportunities. The
    Medical Library Association and the Association of Academic Health
    Sciences Libraries strongly believe that the National Library of
    Medicine should, at a minimum, receive an increase that insures basic
    Library services will be maintained and HPCC and outreach activities
    will be able to expand significantly. Therefore, Mr. Chairman, we
    recommend a 9 percent increase in funding for NLM in fiscal year 1998,
    bringing the Library's total fiscal year 1998 appropriation to $164.7
    million.
        Mr. Chairman, thank you very much for the opportunity to present
    our views.
                                     ______

        Prepared Statement of Lori Dickey, Sudden Infant Death Syndrome
         Alliance, and John and Denise Anderson, CJ Foundation for SIDS
        Mr. Chairman and members of the Subcommittee, thank you for the
    opportunity to submit testimony to you regarding the federal
    government's response to and funding of Sudden Infant Death Syndrome
    (SIDS).
        As the parents of children who have died from SIDS, we have come
    together from opposite coasts of the United States to remind you that
    SIDS is a frightening disease that knows no geographic, economic or
    cultural boundaries. It can strike any infant, even if the parents do
    everything ``right''. In the typical, but always tragic SIDS case, an
    apparently healthy child is put to bed without any ndication that
    something is wrong. Sometime later, the infant is found dead. The
    infant's prior medical history, a complete postmortem examination, and
    a thorough investigation of the death scene provide no explanation for
    the cause of death.
        Although cases of the syndrome have been noted since biblical
    times, organized scientific research into the cause of SIDS is recent,
    dating to the mid-1970's. After decades of scientific study, we are
    just beginning to make real progress in reducing the number of babies
    dying of SIDS and are starting to unravel the mystery. The U.S. ``Back
    to Sleep'' campaign has heightened awareness about SIDS and offered
    parents an opportunity to reduce their infant's risk for SIDS. Initial
    results from this campaign indicate that SIDS rates have been reduced
    by 30 percent, the highest reduction in infant mortality rates in 20
    years! We have also learned that some infants who die of SIDS have an
    abnormality in a region of the brain thought to play a role in heart
    and lung control. This defect may hamper normal respiratory activity,
    and though not the sole cause of SIDS, it may contribute to a larger
    respiratory impairment leading to the baby's death. Whereas healthy
    babies' nervous systems detect breathing difficulties and arouse them,
    it is believed that SIDS babies may not be able to detect reduced
    levels of oxygen or elevated levels of carbon dioxide. Therefore they
    do not respond by gasping for breath, crying, or turning their heads
    like a non-impaired infant, leaving them more vulnerable to SIDS.
        These are important breakthroughs, expanding our understanding
    about SIDS and offering renewed hope that with further research we will
    be able to identify babies that are most vulnerable and ultimately
    prevent all SIDS deaths. However, our work is far from over. In this
    country approximately 4,000-5,000 infants die each year as a result of
    SIDS--nearly one baby every hour, every day. SIDS is the number one
    cause of death for infants one month to one year of age. It is a major
    component of the high rate of infant mortality in the United States,
    yet we still do not know what causes SIDS nor how to prevent it from
    claiming so many young lives.
        The primary federal agency responsible for conducting research into
    SIDS is the National Institute of Child Health and Human Development
    (NICHD) at the National Institutes of Health (NIH). In addition to
    federal funding of SIDS research, there are other agencies involved in
    SIDS efforts. Since 1975, the Maternal and Child Health Bureau (MCHB)
    of the Health Resources and Services Administration (HRSA) has
    supported specific programs for SIDS family counseling and for public
    and professional education about SIDS. Currently, MCHB is implementing
    SIDS initiatives recommended by the federally funded ``Nationwide
    Survey of Sudden Infant Death Syndrome Service'', including issuing a
    grant request for a new SIDS Services Center. The Centers for Disease
    Control and Prevention (CDC) have established a standardized death
    scene investigation protocol for SIDS incidents. An Interagency Panel
    on SIDS, which includes the NIH, HRSA, CDC, Indian Health Services,
    Food and Drug Administration, Substance Abuse and Mental Health Service
    Administration, US Consumer Product Safety Commission, Department of
    Defense, Administration for Children and Families, and the Department
    of Justice help coordinate SIDS activities between government agencies.
    National Institute of Child Health and Human Development
        Mr. Chairman, thanks to the funding which has been provided by this
    Subcommittee, researchers supported by the NICHD SIDS Program have been
    making real progress in the fight against SIDS. In 1988, at the request
    of Congress, the NICHD assembled a group of scientists to examine the
    current state of knowledge about SIDS and articulate future SIDS
    research needs. The result of this effort was the SIDS Five Year
    Research Plan. The Five Year Plan was so successful and productive that
    a second SIDS Five Year Plan was initiated in fiscal year 1995. Through
    research projects sponsored by NICHD, scientists have expanded our base
    knowledge of SIDS and our understanding of the causes and underlying
    mechanisms of the syndrome. Research objectives have focused on:
    identifying infants at risk for becoming victims of SIDS including
    developing markers to detect which babies are most vulnerable;
    clarifying the relationship between high-risk pregnancy, high-risk
    infancy, and SIDS; investigating factors which place babies at higher
    risk and stresses that may trigger a SIDS occurrence; and exploring
    mechanisms and interventions that may prevent SIDS deaths.
        Provided below are a few highlights of the accomplishments achieved
    through your support of the SIDS Five Year Research Plans, as well as
    some indications of the direction of future research concentrations
    outlined in the current year of the second SIDS Five Year Research
    Plan.
        NICHD funded the establishment of a repository for brain and tissue
    specimens from infants and children with various neurodevelopmental
    disorders. Greatly enhancing the resources available for SIDS
    investigation, the accessibility of brain and tissue samples have lead
    to an important understanding of the causes of SIDS and the
    abnormalities of SIDS infants. One picture that has emerged is that
    SIDS infants may be born with a brain deficit that makes them
    vulnerable because they do not respond appropriately to decreased
    oxygen or increased carbon dioxide during sleep.
        Another study focused on the effectiveness of apnea monitors in
    identifying and describing life threatening events. The hope is that
    information gained from this research will aid in the development of
    home monitoring systems that will be simpler, more specific, and have
    greater potential to identify infants poised to have life-threatening
    episode in time to save the infant. In a follow-up study, NICHD
    established a clinical network of investigators to conduct a standard
    protocol for high risk infants and develop centralized data collection
    and analysis. In addition to assisting the development of new
    monitoring technology, this study has added to our understanding about
    the maturation of heart and respiratory functions in sleeping infants.
    The ultimate goal is to establish specific variables (such as an
    infant's cry, cardiorespiration and sleep characteristics) which may be
    used to predict life threatening events in high risk infants.
        NICHD carried out a multi-disciplinary project on the maturation of
    sleep states in the infant and the maturation of life sustaining
    mechanisms during sleep. It is hypothesized that the rapid
    developmental changes in these mechanisms and their interactions may
    make an infant vulnerable to sudden death during a sleep period.
        In cooperation with the Indian Health Service and the Centers for
    Disease Control and Prevention, NICHD conducted a study that
    investigated the causes of and risk factors for the high rate of SIDS
    incidents in the Native American population in the Aberdeen area. A
    case controlled study of sudden unexpected infant deaths in Chicago,
    Illinois, was also initiated in collaboration with CDC to identify
    possible behavioral, social and environmental risk factors for SIDS in
    an inner city, predominantly black population. The incidence of SIDS is
    3 times higher for Blacks than Whites, and 5 times higher for Native
    Americans.
        In May 1994, the NICHD and other members of the U.S. Public Health
    Service, along with the American Academy of Pediatrics, the SIDS
    Alliance, and the Association of SIDS Program Professionals launched
    the ``Back to Sleep'' campaign in the U.S. to encourage parents to put
    healthy babies to sleep on their backs or sides. This campaign was
    based on reports from overseas indicating a substantial increase in the
    incidence of SIDS when infants were put to sleep in the prone (stomach-
    down) position. NICHD has actively monitored the change in infant sleep
    practices subsequent to the campaign. Most recently, research has
    indicated that back sleeping is most preferable. An impressive 30
    percent decline in SIDS rates have occurred since the campaign began;
    the goal of the NICHD is to reduce SIDS deaths by 50 percent and
    increase back sleeping to 85 percent by the year 2000.
        Beginning in fiscal year 1995, thanks to the funding generously
    provided by this Subcommittee, the second SIDS Five Year Research Plan
    was initiated, enabling NICHD to continue to support its active
    research into the etiology, pathogenesis and prevention of SIDS.
    Existing programs were extended and expanded during fiscal year 1995
    and fiscal year 1996, including the high risk infant monitoring study,
    the Chicago infant mortality study, and the ``Back to Sleep'' campaign.
    At the request of the Government of the Russian Federation, NICHD led a
    delegation of scientists and health professionals at a conference on
    Perinatal Pathology to discuss the problem of SIDS in Russian and plan
    areas of collaboration.
        Beginning in fiscal year 1998 NICHD plans to work with the Office
    of Research on Minority Health to establish community based centers in
    areas with a substantial under-represented minority population to
    develop common biomedical research protocols; and to train minority
    researchers. If adequate funds are allocated in fiscal year 1998, NICHD
    plans to extend the prospective ``Infant Care Practices Study'' which
    is evaluating care-taking practices from birth through one year of age,
    documenting infant sleep position and other risk factors, correlating
    factors with sociodemographic characteristics and examining the reasons
    for and predictors of changes in behaviors. Funds will also be used to
    improve and expand the distribution of the ``Back to Sleep'' campaign.
    A prospective study to validate potential predictive biologic tests for
    SIDS risk and studies to increase our knowledge of the molecular,
    cellular, organ system and behavioral aspects of arousal in developing
    organisms are new efforts to be initiated this year.
        The SIDS Alliance is grateful to the Subcommittee's past support.
    We urge you to again provide full funding in the amount of $17,355,000
    for the fourth year of the second Five Year SIDS Research Plan so that
    NICHD can complete critical initiatives. Further research is essential
    to find the reasons for, and means of preventing the tragedy of Sudden
    Infant Death Syndrome.
    Centers for Disease Control
        Due to inconsistencies from state to state at the scene of an
    unexplained infant death, in 1993 Congress recommended that a standard
    death scene protocol be established. The hope was that the death scene
    protocol would be adopted by states to assist in developing a better
    statistical grasp on SIDS cases, and would help to avoid awkward and
    sometimes emotionally charged misunderstandings at the scene. In July
    1993, the Centers for Disease Control and Prevention and the National
    Institute of Child Health and Human Development held a workshop on
    ``Guidelines for Scene Investigation of Sudden Unexplained Infant
    Deaths''. The proceedings of the workshop were published in the
    American Journal of Forensic Sciences in 1995. The actual protocol was
    published in the Mortality Morbidity Weekly Report last summer. The
    long term goal of the SIDS Alliance is to work with and encourage each
    state's adoption of the guidelines.
    Maternal and Child Health Bureau
        The MCHB supports a number of SIDS related services and issues,
    including the National SIDS Resource Center, a major source of current
    information about SIDS. The Center maintains a national database of
    approximately 5,000 books, reports, and articles on SIDS and
    bereavement, and publishes information for national distribution. The
    National SIDS Resource Center has played a significant role in the
    ``Back to Sleep'' campaign, staffing the 800 hotline number and
    processing the more than 4 million pieces of campaign materials.
        MCH Service Block Grant funds are used by MCH State Directors,
    either alone or in combination with non-federal funds, to provide a
    range of services to SIDS families in each state. Block grant funds
    support activities such as contact with families immediately after
    death; discussion of the autopsy results with the family; and family
    support through the first year of bereavement. Unfortunately, in many
    jurisdictions across the country, funds for these services have
    decreased or even been eliminated because of budgetary difficulties.
        At the direction of Congress, MCHB funded the ``Nationwide Survey
    of Sudden Infant Death Syndrome Services'' in 1992. In response to
    needs identified through the Survey, MCHB contracted the development
    and field testing of a curriculum to train health care providers in the
    case management of families who have experienced an infant death, as
    recommended by the Survey. To date, 100 health professionals have
    participated in the training program. MCHB is also supporting the
    development of model programs to meet the needs of families--
    particularly the under served and minorities--who experience an infant
    death, as recommended by the Survey. Four demonstration grants in
    California, Massachusetts, Missouri and New York have been initiated to
    target services for specific populations.
        Currently, the MCHB is in the progress of establishing a national
    SIDS program support center to address SIDS service issues at the
    federal level on an ongoing basis. They have issued a request for
    applications and hope to have the center up and running in the next
    fiscal year. The center was another recommendation of the SIDS Survey.
    Fourth SIDS International Conference
        The SIDS Alliance, in conjunction with SIDS International and in
    cooperation with NICHD, MCHB and CDC hosted the Fourth SIDS
    International Conference on June 23-26, 1996 in Bethesda, Maryland.
    Over 700 registrants and 300 guests participated in this unique event.
    The partnership of countries provided by the International Conference
    has resulted in a heightened awareness of SIDS throughout the world, as
    well as a vital link allowing the rapid exchange of high quality
    international research, prevention, and service data. The global focus
    of efforts facilitates scientific breakthroughs and enables the
    development of innovative public health strategies to combat SIDS and
    assist families. Collaborative efforts such as the Fourth SIDS
    International Conference are crucial in moving forward with all aspects
    of activities relating to SIDS including research, death scene protocol
    and local SIDS services.
        We are all too painfully aware, Sudden Infant Death Syndrome has
    historically been a mystery, leaving in its wake devastated families
    and bewildered physicians. In the past there have been no answers to
    why a baby dies of SIDS. For new and expectant parents there have been
    no answers on how to prevent SIDS from claiming their child. But today,
    we are beginning to find some of the answers such as factors that
    increase the risk for SIDS and actions parents can take to reduce the
    risks. Recent research has provided us with an unprecedented
    opportunity to decrease the number of SIDS deaths by alerting new
    parents about a few simple steps that they can take. It is important to
    realize however, that while following the recommendations presented may
    help to prevent some SIDS deaths, it will not save all babies; we still
    do not know what causes SIDS nor do we know how to predict which babies
    are vulnerable.
        There is still a great deal more that needs to be done in the fight
    against SIDS. It would truly be a tragedy if research efforts were
    halted or delayed at the point when so much progress is being made.
    Research capability and technology are available to conduct additional
    studies that will advance our abilities to eliminate SIDS. Now is the
    time for us to do something about SIDS and prevent babies from dying of
    SIDS in the future.
        As SIDS parents, we are active in private organizations such as the
    SIDS Alliance and the CJ Foundation for SIDS that provide support to
    newly bereaved families, educate the public about SIDS and reducing the
    risks for SIDS, and fund SIDS research; but these organizations cannot
    do it alone. We need your help, your commitment, and your support.
    Moving towards the 21st Century, the political and fiscal realities of
    the world require that the public and private sectors work together to
    solve societal problems.
        We urge the subcommittee to support SIDS research and education by
    funding the NICHD at a level of $690,000,000, a 9.3 percent increase
    over the fiscal year 1997 budget. Designating $17,355,000 for SIDS
    research in fiscal year 1998 is a critical factor in our continued
    progress. We also request that Congress continue to encourage MCHB and
    CDC to move forward with their initiatives to help SIDS families by
    expanding the availability of services and promoting standardized,
    thorough and compassionate death scene investigations.
        On behalf of the thousands of families who have been devastated by
    the loss of a baby to SIDS, and the millions of concerned and
    frightened new parents each year, we thank you for your past leadership
    and support, and for enabling the Sudden Infant Death Syndrome Alliance
    and the CJ Foundation for SIDS to provide this testimony. If you have
    any questions, please do not hesitate to contact us.
                                     ______

        Prepared Statement of David Johnson, Ph.D., Executive Director,
         Federation of Behavioral, Psychological and Cognitive Sciences
        Mr. Chairman, members of the Subcommittee, my name is David
    Johnson. I am Executive Director of the Federation of Behavioral,
    Psychological and Cognitive Sciences, a coalition of 16 scientific
    societies and 150 university graduate departments. The scientists of
    the Federation conduct behavioral research. Support for their work
    comes, among other sources, from the Office of Educational Research and
    Improvement at the Department of Education and the National Institutes
    of Health. My testimony will, therefore, be directed toward the fiscal
    year 1998 appropriation requests for these two agencies.
                 office of educational research and improvement
        Let me first take up the request for the Office of Educational
    Research and Improvement. Any discussion of OERI funding properly
    begins with a look back at OERI's 1995 reauthorization. That
    legislation was carefully crafted over the course of five years, and
    its aim was to make OERI one of the government's premier supporters of
    research and research applications. A major impediment to building a
    solid scientific knowledge base for educational improvement has been
    that OERI and its predecessor, the National Institute of Education were
    buffeted by the political winds and by passing fads regarding
    educational interventions. NIE and OERI found themselves having to
    change gears to fit the current desires of those in power. That is not
    the right way to build a research knowledge base. The right way to do
    this is to look at the real problems in education and to develop
    research agendas to address those problems, much as the National
    Institutes of Health does with diseases. And so it is no happenstance
    that when OERI was reauthorized, it was organized into a series of
    research institutes, each focusing on a major problem area in
    education. It is also not a happenstance that an outside oversight
    board similar to the National Science Board of NSF or the advisory
    committees of the NIH was created to keep OERI on a steady course
    rather than to allow its programs to be whipsawed by each passing
    educational fad.
        OERI has engaged in a strategic planning procedure to assure that
    the elements of the reauthorization accomplish their intended purposes.
    The result is that today we have an OERI that is taking substantial
    strides toward becoming a strong research and research applications
    agency for education. The process is by no means complete, but all
    indications are that the reinvention of OERI is going very well. The
    Congress deserves to take pride in its handiwork with respect to the
    reauthorization because the reauthorization has at last established a
    strong framework for the support of educational research and its
    applications.
        Now it is time to see that adequate resources are placed within
    that framework to bring the promise represented by the reauthorization
    to fruition. Last year the appropriations committees and the Congress
    showed their support for education improvement with a good
    appropriation for OERI. This year, the Administration is asking for an
    appropriation of $510.7 million for OERI. This represents a healthy,
    real increase over fiscal year 1997. The Federation supports the
    Administration request.
        We had long argued that OERI needed to establish a better balance
    between research funded in centers and labs and field-initiated
    research. The reauthorization contained language to bring the three
    approaches to research into better balance. And the fiscal year 1998
    request makes an incremental step toward achieving that balance by
    designating $19 million for field initiated research, $32.1 million for
    research centers and $53.5 million for the regional labs. Each of these
    mechanisms offers a particular strength to overall educational
    research. Field initiated research is the source of new ideas and is a
    means to devote research to areas of concern that are not covered by
    the labs and centers. The research centers are in a good position to
    take findings from basic research and to develop them into workable
    applications. And the regional labs are both a point of dissemination
    for new, scientifically developed applications and for refining
    interventions to fit the particular needs of schools and school
    districts within the service range of the lab. Taken together, these
    three elements of the educational research enterprise represent a
    potential powerhouse for educational improvement. We urge the
    Subcommittee to fully support the Administration's request for OERI.
                         national institutes of health
        Let me turn now to the appropriation request for the National
    Institutes of Health. The Administration is requesting a 2.6 percent
    increase from $12.7 billion to $13.1 billion. The Federation is joining
    with many other scientific organizations and with a number of key
    members of Congress in asking the Subcommittee to recommend an increase
    of 7.5 percent for NIH. This would bring the fiscal year 1998
    appropriation to $13.65 billion. We base our request for this increase
    on two observations. The first is that the pace of discovery in the
    full spectrum of the health sciences is accelerating, and the country
    needs to keep that momentum going. The second is that health care costs
    are at crisis proportions in this country, and one of the most
    important ways to control those costs is to find better ways to keep
    people healthy. The ultimate purpose of health research, including
    health research in the behavioral and social sciences, is to make the
    citizens of this country healthier throughout their lifespan.
        One of the most significant developments in science in recent years
    has been the emergence of cross-disciplinary collaboration as a method
    for carrying out research. It has been important because it has become
    one of the means for accelerating the pace of discovery. Across the
    NIH-supported sciences, the growing tendency for scientists from many
    disciplines to come together to solve research problems has shown
    significant results. AIDS has not been cured, but research has shown
    how a mixture of treatments can ward off the worst effects of AIDS for
    many years. These treatments involve the use of a variety of drugs in
    combination and they involve a demanding level of discipline on the
    part of the patient to see that the medications are taken properly, a
    discipline that can be trained by application of techniques developed
    through behavioral research.
        Similarly, it has been shown that many health problems of the
    elderly stem not from their infirmities, but from their misuse of
    medication. A host of sciences has contributed to the development of
    effective pharmaceuticals for use with elderly patients. Behavioral
    science has contributed interventions to help assure that patients take
    the right medications at the right time.
        Congress recognized the significance of behavioral and social
    sciences research when it established just a few years ago, the Office
    of Behavioral and Social Sciences Research (OBSSR) under the purview of
    the Director of NIH. This office leads the coordination efforts of all
    the institutes and centers in marshalling their individual resources to
    collaborate on behavioral and social sciences research. A recent
    example of this is OBSSR, in conjunction with the National Center of
    Research Resources, has announced a new request for applications (RFA)
    focusing on ``Educational Workshops in Interdisciplinary Research.''
    This RFA fosters the development of cross-disciplinary communication
    and research collaboration among various behavioral and social sciences
    or between the behavioral and social sciences and biomedical sciences.
    As technological advances are developed it is imperative that parallel
    behavioral interventions are also developed.
        Another application of behavioral intervention in concert with the
    use of medicines has to do with deadly diseases that are reemerging
    after decades of dormancy in this country. Tuberculosis is the example
    that comes most readily to mind. A serious challenge is faced with
    respect to these diseases. When medications are misused, the result is
    not only that the patient's disease fails to be controlled, but also
    the bacterium that causes the disease is able to develop resistance to
    medication making the disease much more difficult to treat. These
    diseases are cropping up in indigent populations such as the homeless--
    among the hardest groups in our society to treat.
        Frankly, research is still underway to determine what behavioral
    interventions can best assure that such patients will carry their
    treatments through to conclusion. But behavioral and social scientists
    are working in concert with other scientists and with health providers
    to find answers to the problem. Our experience with collaboration to
    date leaves every reason to believe that even in this very difficult
    area, solutions can be found if support is maintained for the research
    teams that seek the answers.
        NIH funding has permitted us to use researchers wisely, that is, in
    the combinations that will be most efficient in reaching solutions to
    typically multifaceted problems. If solid support continues to sustain
    the pace of discovery, then the variety of ways we have to assure the
    health of our population will increase. The largest per-person
    expenditures for health care occur near the end of life. Thus one goal
    of research has become to understand what interventions through the
    lifespan will have the greatest promise of assuring that the period of
    great illness before the end of life is minimized.
        Behavioral research has a large role to play here since
    controllable choices and behaviors in life have a heavy impact on the
    quality of life of those who are aged. Obviously such behavioral
    choices as whether or not to smoke and what foods and quantities of
    food to consume are among the most important choices we make in
    determining our health. But each of us knows how difficult it is to do
    the right thing.
        Behavioral researchers in cooperation with nutritional researchers,
    neuroscientists, epidemiologists and a host of other specialists are
    working to find ways to make it easier for people to make the right
    choices about their health. The payoff for finding solutions to these
    problems will be not only a healthier population, but also the ability
    of the country to bring health care costs back to a manageable size
    without sacrificing the well-being of the country's citizens. Through
    research, it is becoming possible to maintain good health and keep
    health care costs low at the same time.
        We urge the Subcommittee to recommend a 7.5 percent increase for
    NIH because the investment in knowledge will result in health care cost
    savings that far exceed the research investment. And by the same token,
    slighting research will assure that rising health care costs will
    remain among our most serious national crises.
        I thank the Subcommittee for this opportunity to present our views.
                                     ______

             Prepared Statement of the Lupus Foundation of America
        By way of introduction, my name is Jack Lavery, and while my full-
    time job is that of Senior Vice President of Merrill Lynch & Company, I
    am here today representing the Lupus Foundation of America as its
    Chairman of the Board. I am also representing the nearly 1.4 to 2
    million Americans living with lupus. One of those people is my
    daughter.
        The Lupus Foundation of America is a national advocacy organization
    dedicated to finding the cause and cure for systemic lupus
    erythematosus, a chronic, inflammatory disease in which the body's
    immune system fails to serve its normal protective functions and
    instead forms antibodies that attack healthy tissues and organs. In
    layman's terms, it is the body turning against itself. Lupus is
    incurable and extremely difficult to diagnose because, generally, no
    two people with systemic lupus have exactly the same symptoms.
    Moreover, it is a devastating illness. Thousands of Americans die each
    year from lupus-related complications. For those living with the
    illness, the disease wreaks havoc on their quality of life, with the
    side-effects for current treatments of lupus-related problems often
    causing worse problems than the disease itself.
        Lupus is often called a ``woman's disease'' because 90 percent of
    lupus patients are women. The relative incidence of lupus is even
    greater among African American females, Asian American females, and
    Hispanic females than among Caucasian females. A market research study
    conducted by the Lupus Foundation of America in 1994 showed that as
    many as 1 out of every 102 women, and as many as 1 out of every 62
    women of color, may have lupus. Lupus is truly a diversity issue in
    1997, and I must stress this to both the corporate sector and to the
    Federal government as well.
        I want to thank you, as does the Lupus Foundation of America, Mr.
    Chairman, and the members of this committee for your leadership role in
    ensuring the continuation of research on the immune system at the
    National Institutes of Health and, in particular, the National
    Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS). We
    want the Subcommittee to understand how important such high quality
    research on immune dysfunction is to those with lupus. I therefore urge
    the members of this committee to support funding for the NIAMS at the
    $280 million dollar level recommended by the Coalition of Patient
    Advocates for Skin Disease Research, of which the Lupus Foundation of
    America is a member. This level of funding is crucial for three
    reasons.
        First, it is a pivotal time for lupus research. The outlook for
    lupus patients has significantly improved over the last two decades.
    Better diagnostic techniques and evaluation methods have given
    physicians the tools to manage lupus symptoms and complications more
    effectively. However, a cure is still not within our reach. While
    scientists believe there is a genetic predisposition to the disease,
    environmental factors--such as infections, ultraviolet light, the sun,
    stress, and certain drugs--are also thought to play an important role
    in triggering lupus. We must know what causes lupus before we can
    develop a cure, and this is where research plays a critical role.
        Recently, researchers at the University of California at Los
    Angeles, with funding from NIAMS, the NIH Office of Research on Women's
    Health, and the Lupus Foundation of America, have identified the
    location of a gene that predisposes people to systemic lupus across
    ethnic groups. This discovery and others like it provide important new
    insights on why people get the disease and may help researchers develop
    new treatments. It is a significant and positive step toward finding a
    cause for lupus--a breakthrough where additional research is still
    critical.
        Second, I believe lupus is the prototype for autoimmune diseases,
    as well as for the management of chronic disease more generally.
    Research on lupus, therefore, has far-reaching consequences. Any
    insight we can gain from high quality research on immune dysfunction
    could provide important information on other autoimmune diseases and
    could potentially reveal new and different ways to control other
    chronic diseases.
        Finally, LFA research indicates that as many as 2 million Americans
    report having been diagnosed with lupus. This year, we estimate that
    many thousands of people will call our organization's hotline. Most of
    the callers are individuals recently diagnosed with lupus or their
    family members who seek answers to questions about this disease. Only
    through further research will we find ways to improve both the
    prognosis and the quality of life of the many people living with lupus,
    including my own daughter, Dena.
        Dena developed lupus at the age of 13, although it was initially
    incorrectly diagnosed as juvenile rheumatoid arthritis and then as
    vasculitis, a non-specific inflammation of the blood vessels. At 19,
    she was finally correctly diagnosed with systemic lupus. She is 28 now.
    She has been close to death at least twice and has permanently lost her
    vision in one eye as a result of lupus-related optic neuritis.
        The side effects of treatments for lupus are often as devastating
    as the disease itself. As in my daughter's case, protracted use of
    steroids can cause osteonecrosis, i.e. bone death. She also has had to
    undergo multiple core decompressions in an attempt to recreate blood
    vessel growth. These involved individual operations drilling her left
    and right knees, left and right hips, and left elbow. Though at an age
    when most of her peers do not even have to think about such operations,
    my daughter has now also had surgery for a bilateral hip replacement,
    i.e. two prosthetic hips. Lupus is active in her kidneys, and her
    treatment involves the toxic chemotherapy drug cytoxan. The side
    effects of this drug grow cumulatively with protracted use and can
    include sterility, bladder cancer, and lymphoma.
        I am proud to say that, despite these setbacks, my daughter has
    moved forward with her life like a true fighter and is currently a high
    school English teacher. She is an example of the courage of the many
    Americans who fight lupus everyday.
        Last year, members of the Lupus Foundation of America donated
    nearly 400,000 volunteer hours to raising funds which are used to fund
    our own research, education, and support programs. However, the amount
    of funds lupus patients and their families can raise on their own is
    limited and relatively small compared to what is needed. Federal
    support of medical research in general is critical if we are to find a
    cause and a cure for lupus and other autoimmune diseases.
        The Lupus Foundation is committed to developing and maintaining a
    partnership between the private and public sectors on lupus research.
    Only through such a collaboration can we ensure that the highest-
    quality research is conducted and leads to a cure for this devastating
    disease.
        In summary, funding of lupus research is critical because we are at
    a pivotal time in lupus research; research on lupus could benefit those
    suffering from other autoimmune and chronic illnesses; and, finally,
    many thousands of Americans suffer a decreased quality of life due to
    the devastating nature of this disease. The Lupus Foundation of America
    is committed to push for federally supported research dollars which
    will yield answers to this mysterious disease. I cannot stress enough
    the importance of your support so that research on autoimmune
    dysfunction continues without interruption. Thank you for your
    attention, and my daughter also thanks you, as I'm sure all lupus
    patients and their families do.
                                     ______

    Prepared Statement of Dr. Raymond E. Bye, Jr., Associate Vice President
                     for Research, Florida State University
        Mr. Chairman, thank you and the Members of the Subcommittee for
    this opportunity to present testimony. I would like to take a moment to
    acquaint you with Florida State University. Located in the state
    capitol of Tallahassee, we have been a university since 1950; prior to
    that, we had a long and proud history as a seminary, a college, and a
    women's college. While widely-known for our athletics teams, we have a
    rapidly-emerging reputation as one of the Nation's top public
    universities. Having been designated as a Carnagie Research I
    University several years ago, Florida State University currently
    exceeds $100 million per year in research expenditures. With no
    agricultural nor medical school, few institutions can boast of that
    kind of success. We are strong in both the sciences and the arts. We
    have high quality students; we rank in the top 25 among U. S. colleges
    and universities in attracting National Merit Scholars. Our scientists
    and engineers do excellent research, and they work closely with
    industry to commercialize those results. Florida State ranks seventh
    this year among all U. S. universities in royalties collected from its
    patents and licenses. In short, Florida State University is an exciting
    and rapidly-changing institution.
        Mr. Chairman, last year, Florida State University (FSU) and the
    University of Miami (UM), jointly submitted two collaborative NIH
    projects to this Subcommittee seeking your support. As background, in
    June 1996, the Presidents of FSU and UM signed a unique research and
    education partnership. Two of the areas identified for collaboration
    were risk assessment activities and structural biology and magnetic
    resonance technologies. Last year, this project received strong
    supportive language from your Subcommittee. We greatly appreciate the
    past support for this joint venture and look forward to your continued
    support for our efforts in fiscal year 1998. Let me briefly describe
    these two collaborative projects.
        The FSU/UM Risk Assessment and Intervention Consortium is dedicated
    to reducing the medical and social costs of health care through the
    development of cost efficient, behaviorally effective interventions.
    The Consortium is currently focusing its efforts on two specific
    activities. First, the Consortium is developing strategies to assess
    the access, medication compliance, and transmission risk implication of
    the new antiretroviral protease inhibitor therapies for various HIV
    infected populations. These new therapies represent a major step
    forward in efforts to reduce the onset of AIDS and the incidence of
    AIDS-related mortality. These medications have been effective in
    reducing and regulating viral load in HIV-infected patients to the
    point where many can lead more productive lives. While the advantages
    of these therapies are clear, they also have constraints. First, to be
    effective, patients must adhere to strict and complex treatment
    regimens. Second, although the protease inhibitor therapies are
    effective treatments to prevent the onset of AIDS and reduce and
    control viral load, they do not prevent HIV-infected persons from
    transmitting the virus. The characteristics of many HIV-infected
    persons suggest a difficulty in maintaining compliance. Thus, as health
    is restored, behaviors that could put the individual and others at risk
    must be examined.
        The projects proposed are divided into two phases. The primary
    objectives of phase one are to identify the factors that contribute to
    non-compliance of medication regimens, and to investigate the types and
    frequencies of risk and risk reduction behaviors engaged in by HIV-
    infected persons. The accomplishment of phase one objectives will allow
    our team to move toward the development and testing of further medical
    compliance and risk reductions models in our second phase of this
    project.
        The second area of focus for the Consortium is adolescent substance
    use. Substance use among adolescents is frequently associated with
    other health risk behaviors and has costly long-term implications. Data
    from two recently-released national surveys show that substance use is
    increasing among adolescents, that the age of first use has become
    younger, and that adolescents are increasingly viewing substance use as
    an acceptable behavior. These patterns of behavior and attitude prevail
    across all categories of drugs, and arose after the Drug Abuse
    Resistance Education (DARE) program had been introduced across the
    country. Current trends--coupled with several independent evaluations
    of the DARE program and its lack of theoretical grounding--clearly
    indicate that the DARE program is not an effective intervention
    program. A proposal is being developed which will allow the Consortium
    to develop and test alternative interventions for adolescent substance
    use and associated risk behaviors.
        Funding is being sought for the Risk Assessment and Intervention
    Consortium at the $4 million level for fiscal year 1998 through the
    Department of Health and Human Services.
        Our second SSU-UM collaborative effort involves structural biology
    and magnetic resonance technologies. With this collaboration, the
    universities, along with the National High Magnetic Field Laboratory
    (NHMFL), will initiate a major research and instrumentation effort that
    is built around macromolecular structure and functions--research key to
    drug development, delivery, and aspects of molecular function and
    binding--all of which are critical to many medical areas.
        The FSU/UM collaboration, working closely with the NHMFL, and, with
    the aid of NMR instrumentation, will maximize the vast potential for
    biomedical research, training, and clinical utilization of magnetic
    resonance imaging (MRI), cellular and structural biology, and a broad
    range of other exciting research initiatives. Further, it is our long-
    term intent to establish a national network, where universities
    throughout the United States can benefit.
        To help facilitate a nationwide program, the collaborators will
    first create a State-wide demonstration project, directed at the
    establishment of a high speed data network to support the use of shared
    instrumentation and human resources. This network will provide an
    opportunity to develop and test required human and hardware interfaces
    and protocols critical to the successful implementation such a concept.
    This initiative will serve as a demonstration for a larger network
    linking most universities in the United States to the NHMFL and the
    establishment of a national ``collaoratorium'' for shared
    instrumentation and resources.
        Funding is being sought for this Magnetic Resonance network from
    the National Institutes of Health at the $4 million level for fiscal
    year 1998.
        Having concluded the discussion regarding the FSU/UM
    collaborations, I would like to discuss, FSU's proposed, Rosa Parks
    Institute in Civil Liberties. The purpose of the Institute is to
    develop, produce, and disseminate programs and materials that not only
    highlight diversity but forge positive change in the work and school
    environments. Consistent with the life and works of Mrs. Parks, the
    Institutes' ultimate objective is to assist individuals in realizing
    and achieving their highest potential.
        The Institute will incorporate various projects including the
    following: A leadership development activity that will utilize
    individuals at mid-career who have dedicated their lives to actualizing
    the ideals of positive values at home, school, and the workplace. These
    individuals will become mentors and role models in this effort. Next, a
    university and community collaboration will include working with
    various partners such as civic organizations, educational institutions,
    business, and industry in order to promote educational dialogue
    concerning human rights, organizational, and societal change, and the
    importance of volunteerism. Thirdly, an oral history activity will
    focus on gathering direct personal perspectives from several leaders in
    the civil rights movement on their assessments of our past, present,
    and future with regard to racial diversity. Finally, a distance
    education technology program which will promote cultural diversity
    programs that can be utilized in education and employment settings.
        The Institute will present a broad range of programs comprised of
    short courses and lectures which will be delivered both at the
    Institute and at remote sites around the Nation. New technologies will
    be crucial in the delivery and assessment of the programs. A Website
    Clearinghouse will be established for individuals, schools and
    businesses, around the country, to disseminate information provided by
    the Institute. Further, the Institute will obtain feedback, via the
    website, from participants to evaluate the effectiveness of the
    programs that are offered.
        Funding for the Rosa Parks Institute in Civil Liberties is being
    sought from the U.S. Department of Labor at the $1 million level.
        Mr. Chairman, these activities discussed will make important
    contributions to solving some key problems and concerns we face today.
    Your support would be appreciated. And, again, thank you for the
    opportunity to present these views for your consideration.
                                     ______

    Prepared Statement of the American Association of Colleges of Nursing,
            on Behalf of the National Institute of Nursing Research
        The American Association of Colleges of Nursing (AACN) submits this
    statement in support of funding for the National Institute of Nursing
    Research (NINR) at the National Institutes of Health and the Nurse
    Education Act. AACN represents over 510 baccalaureate, master's and
    doctoral nursing education programs in senior colleges and universities
    across the United States. We very much appreciate the past strong
    support this subcommittee, the Congress and the Administration have
    shown for NIH and for nursing education, and appreciate the opportunity
    to be heard on this important matter.
        Federal funds are very important to schools of nursing, nursing
    students and society. In fiscal year 1996, 57 AACN member institutions
    received research funding from NINR and 13 received training funds.
    Further, a number of AACN member schools receive funds from other NIH
    Institutes and Centers and from other federal programs such as the
    Nurse Education Act and Scholarships for Disadvantaged Students, as
    well as Higher Education Act programs.
        While being sensitive to the need for deficit reduction, overall,
    AACN respectfully recommends increasing NINR funding 9 percent, from
    $59.743 million in fiscal year 1997 to $65.120 million for fiscal year
    1998. Because high quality professional nursing education is vital to
    research as it is to practice and teaching, AACN also stresses the
    importance of maintaining sound funding for the Nurse Education Act and
    other federal programs that help nursing schools and students. AACN
    supports the funding levels recommended by the Health Professions and
    Nursing Education Coalition of $302 million for PHSA Titles VII and
    VIII.
    Nursing Practice Benefits from Scientific Inquiry
        Nurses, the largest group of health care professionals, are the
    backbone of patient care, not just in hospitals but in ambulatory
    clinics, public health departments, long term care facilities, skilled
    care nursing homes, schools, and hospices, as well as in corporations
    and private employ. They assess and monitor patients, evaluate the
    progress of treatment, carefully watch for adverse effects or
    conditions, and help prepare the patient and his or her family for re-
    entry into the everyday world. Nurses service all phases of illness and
    provide care to the most vulnerable, the very old, the very young and
    women. Nursing's presence in all domains of health care makes nursing
    research imperative to improve patient care and outcomes, with a
    recognition of the need to be cost effective. Nurses help patients and
    their families to manage difficult symptoms and disabilities, such as
    pain, incontinence, or paralysis; and to resume self-sufficiency when
    illness is most debilitating or threatening; even the transition from
    life to death. Nurses are the ones who assist people to resume
    functional status, mentally and physically, when medical interventions,
    however well meant and professionally done, have rendered them unable
    to do so for themselves. Nursing's issues of care span the spectrum of
    human concerns and are real and immediate; therefore, so is our
    research agenda. As a result NINR's broad research perspective links
    human health science to patient recovery and the promotion of health.
    Health promotion and disease prevention, a long time, elemental role of
    nursing practice and research, can reduce health costs and improve the
    quality of life.
    Nursing Research Emphasizes People, Not Just a Disease or Injury
        Nurses frequently help patients manage pain. Through NINR, research
    is being done on how to assess, control and manage pain, a major source
    of health care visits, hospital complications and lost work
    productivity. Recent nursing research studies have shown that poor pain
    control following surgery is linked to enhanced tumor growth in animals
    and that a particular type of pain reliever works better for women than
    men. And nursing research has refuted the myth that infant pain
    following surgery is minimal.
        While research associated with life-threatening diseases such as
    heart disease, AIDS and cancer has high visibility, the possibility of
    having to live with a chronic condition is a more likely prospect for
    many Americans. With the ``graying of America,'' we can only expect
    this to increase. The frailties of aging and chronic illness are high
    on the agenda of nursing researchers because it is most often nurses
    who are coordinating or giving the direct care to affected individuals.
    For example, about 4 million Americans suffer from Alzheimer's disease,
    many living 8 to 20 years before dying, after requiring either
    expensive facility care or major caregiving commitments from their
    families. The NINR is supporting research to discover how to limit
    disruptive behaviors such as wandering and loud vocalizations and to
    promote normal resting patterns by testing light therapy and behavioral
    modifications. Solutions to these issues can help a family care for
    patients at home and avoid costly institutionalization. An estimated
    250,000 hip fractures occur in people over 65 years of age at a cost of
    $7 billion per year in the United States. Older adults in good physical
    condition are less likely to fall and break hips or other major bones,
    leading to hospitalization, and possibly custodial care and death. NINR
    research has sought ways for older people to keep fit and to test the
    effects of hip pads to prevent fractures in a fall.
    Nursing Research to Promote Health and Prevent Disease
        Until recently, America had a disease and illness system rather
    than a health care system. Plenty of information suggests that the root
    of many health care problems are food, drink and substance abuse,
    inadequate stress management, along with exercise, sleep, social, and
    educational deprivations or abuse. Major health problems such as heart
    disease, some cancers, diabetes, rheumatic disease, and ulcers have
    multiple contributing factors, in large measure due to unhealthy
    lifestyles. These disease-contributing factors largely are behaviors,
    which if modified prior to the development of disease consequences,
    could save much money. Teaching people how to treat or prevent illness
    and promote health will reduce the cost of health care, an idea
    emphasized in nursing for a long time. NINR's research agenda
    recognizes the concept that nutrition, sleep and exercise and other
    behaviors have enormous impacts on health status.
        One NINR funded project is studying women with fibromyalgia (FM), a
    mysterious, invisible chronic illness (no known pathology) that affects
    upwards of 10 million Americans, five times more women than men. Almost
    all report overwhelming fatigue and poor sleep, awakening with muscle
    pain and discomfort. This study is designed to link separate pieces of
    evidence that a sleep disturbance is fundamental and that a hormone
    disturbance is evident. Why is this important? Chronically disturbed
    sleep obviously can lead to a decline in health status. Poor sleep
    impairs daytime performance, results in injury accidents (estimated to
    cost society upwards of 15 billion dollars a year), and retards tissue
    healing, alters immune function, and may herald early onset of
    psychiatric illness. This study will generate a basis for defining
    which treatments to test, be they sleep therapies, hormone
    augmentation, or some combination. Better treatments could reduce
    health care costs by reducing health care visits, since FM accounts for
    15 to 40 percent of referrals to rheumatologists.
        Understanding contributing factors to domestic violence against
    women is a focus for nursing researchers to gather knowledge for
    prevention of health problems. One NINR project involves examining the
    effects of battering during pregnancy on the victim and subsequently on
    her baby. Battering can lead to increased likelihood of delivering low
    birthweight infants that need costly tertiary care, increased child
    abuse, as well as increased smoking, substance abuse, depression, and
    other health risk factors in mothers. Outcomes from this study will
    inform us on identification of those at risk and guide the testing of
    primary and secondary prevention strategies.
        Another NINR project funded a prenatal training program for
    expectant mothers that reduced the incidence of low birthweight babies.
    Tertiary care costs were sharply reduced (38 percent for diabetic
    mothers and their babies; 29 percent or cesarean section mothers and
    their babies) by a carefully planned early discharge based on from
    hospital program that includes a home visit follow up with mother and
    child by advanced practice nurses.
        NINR supported research is being done to improve the health of
    school children, particularly African-American at risk for
    cardiovascular disease, through interventions focused on education,
    diet and exercise. This North Carolina project demonstrated favorable
    effects on reducing child body fat, fitness and cholesterol levels.
    Healthy behavior patterns instilled in these youngsters hopefully will
    produce adults with lower incidence of cardiovascular and other
    disease.
    NINR: Strong Stewardship of Resources
        Funds appropriated to the NINR represent only a little less than a
    half percent of the $12.7 billion total NIH appropriation. But this
    relatively small amount of money makes a meaningful difference for
    nurse researchers to develop knowledge to better the health of
    Americans. NINR not only funds institutional and individual
    researchers, but also supports the training of nurse scientists at
    several career levels. NINR provides funds for the preparation of
    highly skilled nurse researchers through pre-and post-doctoral
    fellowships awarded to leading research universities and to deserving
    individuals, and it offers senior fellowships that encourage
    experienced researchers to pursue new research initiatives. Most major
    universities are desperately in need of skilled researchers for faculty
    since nursing is a relatively new health science and must grow to
    increase the critical mass of nurse researchers and amplify the synergy
    of discovery. The National Research Council has recommended that
    training positions for nurse researchers are increased to 500 in 1996-
    99. But NINR's fiscal year 1997 financial resources of $4.6 million
    will support an estimated 113 individual awards and 95 institutional
    awards. We can and should do better.
        NINR stretches its dollars by collaborating with other NIH entities
    on scientific issues of shared interest; NINR will spend $1.2 million
    in fiscal year 1997 on new intramural research projects. NINR also
    supports 6 specialized research centers, serving as cores for
    interdisciplinary health science work by established investigators. The
    foci are Prevention and Management of Chronic Illness in Vulnerable
    People (University of North Carolina at Chapel Hill), Chronic Illness
    and Disability (University of Pittsburgh), Symptom Management
    (University of California at San Francisco), Women' Health (University
    of Washington), Serious Illness and Cancer (University of
    Pennsylvania), and Gerontology (University of Iowa). In fiscal year
    1997, NINR expects to commit $1.87 million to the centers program. All
    will advance human science knowledge.
    NINR Initiatives for Fiscal Year 1998
        NINR's initiatives for fiscal year 1998 will be symptom management
    for chronic neurological conditions (stroke, epilepsy, Parkinson's
    disease), managing traumatic brain injury, improving quality of life
    for transplantation patients, and end of life issues. In order to
    leverage our resources and maximize our health research dollars, the
    NINR co-sponsors research opportunities with other NIH institutes to
    foster multidisciplinary work. For example, an NINR project in
    collaboration with the National Institute on Aging will assess and
    train caregivers from a variety of ethnic groups who care for
    Alzheimer's disease patients.
    Nursing Education: A Sound Foundation for Nursing Research and Practice
        Given the vast influence of nurses on health care delivery and the
    commitment of the profession to research addressing the immediate
    issues of human health science, the education of nurses has been and is
    central to our capacity to deliver cost-effective, high performance
    health care delivery. Nursing education is, as NINR Director Patricia
    Grady put it a few weeks ago when she appeared before the House
    Appropriations Subcommittee, ``a pipeline issue'' for nursing research.
    Quality educational preparation is central to competence in nursing
    practice and research. For that reason, AACN also requests funding for
    federal nursing education programs.
    The Nurse Education Act
        Recognizing the importance of nursing education programs, Congress
    appropriated $65.4 million for the Nurse Education Act (Public Health
    Service Act Title VIII) for fiscal year 1997. The NEA supports the
    programs for nursing students who will give direct care, and who will
    become the researchers, nursing faculty, and advanced practice nurses
    (APNs) of tomorrow. Many nurses provide cost effective health care to
    people who would otherwise have no health care. For example, it is
    estimated that about 70 percent of the anesthesia in the United States
    are given by nurse anesthetists. Nurse practitioners, midwives and
    other nursing professionals are in great demand in a decentralized,
    community based health system becoming more oriented toward wellness,
    health promotion, and primary care. Nurses are often willing to work in
    an underserved community. NEA funds mean direct financial support to
    disadvantaged students, which increases the number of potential
    minority faculty and researchers. The NEA has provided seed money for
    28 nurse-managed health centers that, as part of the clinical teaching
    process, deliver primary care to high risk and vulnerable populations.
    AACN respectfully requests maintaining the fiscal year 1997 level of
    funding of $65.4 million for the NEA.
    Other Education Programs
        AACN recommends funding at the fiscal year 1997 level for the
    following Public Health Service Act education programs important to
    nursing: Scholarships for Disadvantaged Students, National Health
    Service Corps scholarship and loan repayment, Rural Health Outreach
    Grants, and Interdisciplinary Training for Rural Health. AACN supports
    a total figure of $302 million for PHSA Titles VII and VIII. Adequate
    federal funds also should be committed to the gathering of data about
    nursing practice, demand, and supply.
        We need to know what works and what don't so that NEA and other
    funds can be intelligently allocated. This means adequate federal
    support for the Agency for Health Care Policy and Research for
    assessment of the outcomes of health services and medical procedures in
    general. Lastly, AACN urges the subcommittee to fund Higher Education
    Act programs used by nursing students including Pell Grants, Perkins
    Loans, Harris Scholarships, Federal Work Study, GANN, and TRIO
    programs. Each in its own way helps students and ultimately our
    society.
    Conclusion
        AACN believes that a sound approach to the health of the public in
    America is based on linking adequate support for human health research
    such as that sponsored by NINR to the education of nurses and other
    health professionals to meet America's health care research and
    population care needs.
                                     ______

        Prepared Statement of Dr. Robert J. Gumnit, President, National
                        Association of Epilepsy Centers
        Mr. Chairman and Members of the Subcommittee, I am Dr. Robert J.
    Gumnit, President of MINCEP Epilepsy Care, a comprehensive epilepsy
    center in Minneapolis, Minnesota and Clinical Professor of Neurology,
    Neurosurgery and Pharmacy at the University of Minnesota. I am here
    today in my capacity as the President of the National Association of
    Epilepsy Centers (NAEC), an organization representing 60 specialized
    epilepsy centers in the U.S.
        Approximately 2.5 million people in the United States have
    epilepsy--a chronic neurological condition defined as the occurrence of
    more than one seizure on more than one occasion. Epilepsy primarily
    affects children and young adults. Each year about 100,000 people are
    diagnosed with epilepsy. More than two-thirds of them are below the age
    of 25.
        Timely entry into the medical care system, making the correct
    diagnosis, and early and appropriate treatment of the medical,
    psychological and social conditions of people with epilepsy have been
    major goals of the National Association of Epilepsy Centers. These
    goals are particularly important because the initial diagnosis of
    epilepsy is most frequently made by primary care physicians who treat a
    very limited number of persons with epilepsy. With the increased use of
    managed care and a greater dependence on primary care practitioners for
    managing patients with chronic diseases such as epilepsy, it is
    increasingly important that new information be widely disseminated on
    accurate diagnosis and treatment options available to achieve seizure
    control. Chronic disease tends to be slighted under managed care.
    Epilepsy is a very treatable chronic disease, and this disability is
    often reversible.
        For these reasons NAEC has explored avenues within the Centers for
    Disease Control and Prevention (CDC) to educate health care
    practitioners and people with epilepsy and their families about the
    benefits of early intervention. This Subcommittee was instrumental in
    initiating funding for an epilepsy program at CDC. For 1998, NAEC seeks
    an extension of the CDC program at the originally requested level of $1
    million.
    CDC--Educational Efforts to Promote Early Intervention
        As directed by Congress in 1993, the CDC launched its epilepsy
    program within the National Center for Chronic Disease Prevention and
    Health Promotion. Focusing on early detection and effective treatment
    of epilepsy and enhancing the overall quality of life for persons with
    epilepsy and their families, the epilepsy program targets its outreach
    and education efforts on consumers, health professionals, and health
    systems including managed care plans and Medicaid. The NAEC, the
    Epilepsy Foundation of America (EFA) and the American Epilepsy Society
    (AES) have been active participants in a working group with the CDC in
    planning the future course of the epilepsy program.
        We are currently working with CDC on plans for a conference
    scheduled for September to set objectives for improving the health of
    persons with epilepsy and seizure disorders. The conference will bring
    experts in the field of epilepsy treatment and research together with
    patients and families affected by epilepsy and seizure disorders as
    well as public health and managed care professionals and primary care
    providers. Experts in the field will present data and findings from
    existing scientific literature to show that timely recognition of
    seizures and effective treatment can reduce the risk of subsequent
    brain damage, as well as disability and mortality from injuries
    incurred during a seizure and from reoccurring seizures. We also plan
    to discuss strategies for overcoming barriers to optimal health and
    functioning for persons with epilepsy and seizures.
        The intent of the CDC epilepsy initiative is not only to improve
    the care of people with epilepsy and seizure disorders, thus helping
    them live more active and productive lives, but also, to contribute to
    the development of model strategies of care for people with other
    chronic diseases. While treating epilepsy and seizure disorders
    requires specific expertise among providers, the core health care
    services and system elements needed to provide optimal care for people
    with epilepsy is remarkably similar to those needed by people with
    diabetes, asthma and Parkinson's disease, as well as other chronic
    diseases. Through this model epilepsy program and anticipated follow-up
    activities, we hope to develop effective prevention, early recognition,
    appropriate care and treatment strategies leading to improved health
    and reduced disabilities for people with epilepsy and seizures which
    can be extended to individuals with other chronic diseases.
        Funding for the epilepsy program has remained at just over $700,000
    since fiscal year 1994. NAEC recommends that the program be provided a
    modest increase of $300,000 in order to begin implementation of the
    recommendations from the September conference next year.
    HCFA--Research, Demonstration and Evaluation
        Though Medicare and Medicaid were both created to provide coverage
    for the episodic acute care needs of beneficiaries, greater emphasis is
    now being given to prevention and the management of chronic disease
    including key quality of life issues. While the incidence of epilepsy
    among Medicare beneficiaries is not as common as other disorders, the
    prevalence of this disease in the Medicaid population is significant.
    Studies to determine how health care systems can be organized to best
    care for and support people with epilepsy and other chronic diseases
    could yield information that provides better treatment for individuals
    and over the long term, substantially reduce the high costs of
    unnecessary acute care often paid for by these programs.
        Consider the following:
      --Chronic diseases require close and repeated contact with numerous
            health care providers to diagnose the condition and stabilize
            the treatment regimen.
      --Because chronic diseases, by their nature, are rarely cured, their
            care requires a focus on helping people to remain active,
            productive members of society, as well as on arresting the
            progression of the disease and preventing complications.
      --Chronic diseases require repeated health care visits and active
            monitoring throughout the patient's lifetime.
      --And chronic diseases generally place a considerable burden on the
            patient and family; while the physician can provide
            prescriptions, advice, information, and warnings of the dire
            consequences of non-compliance, the day-to-day care for most
            chronic condition falls on the shoulders of the patient and his
            or her family.
        NAEC seeks the support of this Subcommittee in encouraging HCFA to
    expand its research and demonstration activities to help determine the
    unique elements of effectively managing the care individuals with
    chronic disease. Epilepsy is an excellent model for determining chronic
    disease treatment plans that is oriented toward improved health and
    functioning, and empowers patients to live long and productive lives.
    NINDS--Enhance Research In Epilepsy
        I want to commend the Subcommittee for its support of the National
    Institutes of Health and the increase in research funding provided for
    fiscal year 1997. On behalf of the epilepsy community, I urge the
    Subcommittee to build upon last year's increase and provide for a
    continued high level of support for NIH and the National Institute of
    Neurological Disorders and Stroke (NINDS). Medical research has greatly
    improved the quality of life for persons with epilepsy and their
    families. The development of anti-seizure medications over the past few
    decades, as well as the more recent advent of improved surgical
    techniques, has enabled many people with the condition to lead
    independent and productive lives.
                                     ______

       Prepared Statement of the Public Policy Council, on behalf of the
    Society for Pediatric Research, the American Pediatric Society, and the
          Association of Medical School Pediatric Department Chairmen
        This statement is submitted on behalf of the Public Policy Council
    which represents the Society for Pediatric Research, the American
    Pediatric Society and the Association of Medical School Pediatric
    Department Chairmen. These organizations represent thousands of
    pediatric researchers involved in basic, clinical and health services
    research with the goal of improving the quality of life for all of
    America's children. These scientists come from medical schools,
    children's hospitals and other research facilities. They are the
    driving force behind advances in science that benefit children and also
    are the mentors for training our next generation of pediatric
    scientists.
        In addition to the specific recommendations which are attached, we
    also support the fiscal year 1998 National Institutes for Health (NIH)
    recommendation presented by the Ad Hoc Group for Medical Research
    Funding, the Friends of NICHD Coalition's recommendation for the
    National Institute of Child Health and Human Development and the
    overall health spending recommendations of the Coalition for Health
    Funding.
        There are four main points to our statement: First, greater
    emphasis must be given to pediatric clinical research; second, clinical
    studies offer the best hope for reducing the cost of medical care while
    improving the health of our children, and indeed, all of our citizens;
    third, all that benefit from clinical studies need to share their cost,
    this includes insurance companies and managed care organizations; and
    fourth, children need more opportunities to participate in clinical
    trials.
    Clinical Research:
        We are in an age of great technological innovation that has allowed
    for a better understanding of the pathogenesis of disease, enhancing
    diagnostic capabilities and improving the treatment of patients.
    However, the actual practice of medicine is too often based on
    empiricism rather than evidence derived from well-controlled clinical
    trials. Clinical trials when done well can establish the usefulness of
    a particular test or treatment and examine their cost effectiveness
    compared to current practice. Unfortunately, only 10--20 percent of
    medical practices are based on data from well-controlled studies
    according to the Government Accounting Office. Thus, when your child or
    grandchild is being treated for an illness today there is only about a
    one in five chance that the therapy is based on solid evidence that it
    will be helpful.
        Last year, this committee put a down payment on our children's
    future by funding the Pediatric Research Initiative at $5 million to
    increase the pediatric biomedical and behavioral research at NIH.
    Through the leadership of Senator Mike DeWine, the Pediatric Research
    Initiative has been reintroduced this year, and it is our hope that
    this Committee will maintain its commitment to improving the quantity
    and quality of pediatric research at NIH, its sister agencies and
    throughout the country.
    Clinical Studies and Cost-Benefit:
        In the current era of constricting federal dollars for health care
    and research, most of our colleagues believe that U.S. medical research
    is currently in a crisis. We recognize that the NIH received a
    substantial increase in funding this year and applaud the high priority
    Congress and this subcommittee in particular has given to health care
    research. However, we remain concerned that the percentage of grants
    being funded continues to decrease. There is also growing concern that
    the focus of academic institutions, where most of the nation's
    pediatric research occurs, is shifting away from the traditional triple
    role of patient care, teaching and research to one concerned
    predominately with clinical care. In the long run such a shift in focus
    will be detrimental to the health of our children and very costly. This
    change in emphasis will impair the quality of the training of future
    generations of pediatric medical scientists. Furthermore, a decreased
    emphasis on research will lessen our ability to prevent disease in
    children and eventually lead to an increase in the number of adults who
    are medically ill and therefore less productive. Certainly members of
    this subcommittee remember the crippling effects the polio virus had on
    people, both during their childhood and later on when they became
    adults. The development of two polio vaccines proved not only to be a
    very cost-effective means for preventing this disease in the United
    States, but will likely, in the near future, bring about the
    elimination throughout the world.
        It is our belief that this current crisis also allows us an
    opportunity to utilize research as the primary tool to overcome the
    constraints of a constricting budget. We must use research not only to
    manage or cure disease, but also to decide how we can most effectively
    spend our health care dollars. It is no longer enough to ask if a
    treatment works. The question is also whether the therapy is a cost-
    effective use of our resources. If we have the foresight to put a
    significant portion of these cost savings back into additional research
    endeavors, we believe we can achieve two important but seemingly
    opposing goals; i.e., better health for our citizens at a lower cost.
        In pediatrics we have some spectacular examples of how well-
    controlled multi-center trials can improve the health of our children
    in a cost effective manner. For example research supported by NIH led
    to the development of surfactant treatment for Respiratory Distress
    Syndrome (RDS). Surfactant can be administered into the lungs of
    premature infants and has resulted in fewer deaths of infants from
    Respiratory Distress Syndrome (RDS). This has saved an estimated $90
    million a year in hospital costs.
        Another example is the finding that vitamin supplements containing
    folic acid prevent common and disabling birth defects, such as spina
    bifida and anencephaly. These birth defects are the leading cause of
    disabling conditions in children, which cost families and our
    government billions of dollars each year. Research discovered that if
    American women of childbearing age consumed an adequate daily supply of
    folic acid, 2,000-3,000 cases of birth defects could be prevented each
    year, saving nearly $245 million.
        Unfortunately, many excellent clinical studies that are proposed to
    examine these types of clinical issues are delayed or canceled.
    Numerous examples can be cited. One case that occurred involves a
    neonatologist who submitted a study to the Agency for Health Care
    Policy and Research (AHCPR) to examine cost-effective approaches for
    discharge and follow-up of premature infants with chronic respiratory
    disease. Despite receiving an outstanding priority score at the 3.6
    percentile the funding to do this study remains uncertain.
    Cost Sharing:
        The monies to do these clinical studies should not come at the
    expense of basic or translational research, for these provide the
    foundation upon which clinical studies are based. Therefore, we must
    find additional funding to do well-controlled clinical studies. The
    pediatric academic societies have long recognized the need to increase
    the amount of clinical research in children and recently have
    established a program designed to help initiate multi-center clinical
    trials in children.
        Other means to enhance our clinical research capabilities must also
    be explored. We believe that insurance companies and managed care
    organizations must share equally in funding clinical research, since
    their viability is predicated on delivering high quality, cost-
    effective health care. Congress should encourage and explore incentives
    to persuade companies that benefit from clinical research to provide
    substantial funding for these endeavors.
        Other health care companies, such as those in the pharmaceutical
    industry should also be encouraged to contribute more resources to
    research. In our opinion, increased funding in research is a long-term
    investment as opposed to a short-term view based on bottom line
    profitability. The results of a 1997 Research!America Harris poll in
    Ohio showed that 77 percent of those surveyed urged Congress to support
    legislation that will encourage private industry to conduct medical
    research.
    Inclusion of Children in Clinical Trials:
        Finally, in the past the tendency has been to exclude children from
    many relevant clinical trials. This was done under the guise that new
    procedures and treatments should first be tested in adults. Multiple
    studies, such as those involving HIV-infected children, show that
    children can benefit greatly from inclusion in well designed clinical
    trials, some of which can be conducted while similar studies are
    ongoing in adults. The pediatric academic societies believe that this
    issue needs to be addressed.
        This Committee has also shared similar concerns as evidenced by the
    fiscal year 1996 Committee Report language which included the
    following:
        The Committee strongly encourages the NIH to strengthen its
    portfolio of basic, behavioral and clinical research conducted and
    supported by all of its relevant Institutes to establish priorities for
    pediatric research, and to ensure the adequacy of translational
    research from the laboratory to the clinical setting. The Committee
    encourages the NIH to establish guidelines to include children in
    clinical research trials conducted and supported by NIH.
        Last June, the NIH convened a workshop on the ``Inclusion of
    Children in Clinical Research.'' The workshop examined the
    participation of children in clinical research, including clinical
    trials, sponsored by all Institutes, Centers and Divisions of the NIH.
    As a direct result of that workshop, in January 1997 the NIH issued a
    notice recommending ``that when there is sound scientific rationale for
    including children in research, investigators should be expected to do
    so unless there is a strong overriding reason that justifies their
    exclusion from the studies.'' The policy states that ``although this is
    the same scientific rational that is the basis for the policy requiring
    the inclusion of women and minorities in clinical research, this policy
    does not mandate the inclusion of children in all clinical research.
    Because the issues and sensitivities surrounding children's
    participation in research are significantly different from those
    regarding women and minorities, such a mandate would be
    inappropriate.'' The NIH did stress, however, that ``even though the
    inclusion of children is not an absolute requirement, applicants for
    NIH funding will be expected to address this issue in their
    proposals.'' The pediatric academic societies are committed to working
    with NIH to monitor its progress on this important matter.
        We would further hope that other agencies with a research agenda,
    such as the FDA and the CDC also further examine this important issue.
        Thank you for the opportunity to submit this statement.
                                     ______

       Prepared Statement of the American Academy of Nurse Practitioners
        The American Academy of Nurse Practitioners represents over 17,000
    nurse practitioners of all specialties throughout the United States.
    This testimony has been submitted to speak to the need for continued
    and increased federal funding for nurse practitioner and nurse mid-wife
    educational programs and traineeships for the coming fiscal year.
        Nurse practitioners and nurse midwives constitute an effective body
    of primary care providers that may be utilized at a cost savings in
    both fee for service and managed care programs in this country. Savings
    to the federal government of greater than $55,000,000 in the Medicare
    program are estimated with All utilization of nurse practitioners in
    the system. Likewise, managed care data is becoming available that
    demonstrates an aggregate patient per month cost savings of over 50
    percent among patients seen by nurse practitioners when compared to
    similar patients being cared for by physicians.
        Other cost savings that can be realized by the government when
    nurse practitioners and nurse midwives are appropriately utilized,
    include savings due to reductions in emergency room visits and
    hospitalizations and savings associated with the treatment of illness
    in its early stages. Multiple studies in both fee for service and, now,
    managed care have been conducted that demonstrate cost savings in
    diagnostic testing, prescribing and hospitalizations and emergency room
    use when these two groups of providers are utilized to provide primary
    care to populations of all ages.
        As this committee knows, nurse practitioners and nurse midwives are
    highly qualified primary care providers who have demonstrated their
    ability and interest in providing primary medical care to individuals
    and families in both rural and urban settings, regardless of age,
    occupation or income. The quality of their care has been well
    documented over the years. With their advanced preparation, they are
    able to manage the medical and health problems seen in the primary care
    and acute care settings in which they work.
        Nurse practitioner specialties include family, adult, pediatric,
    women's health and gerontologic care. Their services include obtaining
    medical histories, performing physical examinations, ordering,
    performing and interpreting diagnostic tests, diagnosing and treating
    acute episodic and chronic illnesses including the prescription of
    medications and other nonpharmacologic treatments, and appropriate
    referral to other sources of care. In addition, they are skilled in the
    areas of health promotion and disease prevention which include health
    education, screening and counseling for patients of all ages.
        Nurse practitioners and nurse midwives provide care in both rural
    and urban settings, in community health centers, public health clinics,
    hospitals and hospital outpatient clinics, Indian Health Service and
    National Health Service Corps sites as well as in private primary care
    offices and other freestanding primary care settings. According to data
    collected by the American Academy of Nurse Practitioners, 82 percent of
    nurse practitioners are employed in primary care settings and over 50
    percent of their patients have family incomes in the poverty range.
        In order to guarantee the proper preparation of nurse practitioners
    and nurse mid-wives, assistance in the development of high quality
    programs continues to be needed across the country. The funding for
    such programs has always been limited, and should always be more, but
    the value and worth of such funding continues to be undisputable.
        Two years ago only 14 new programs out of 127 applicants were able
    to be funded for a three year period at the amount of approximately
    $200,000 per program. Last year, new applicants were not even solicited
    as the Division of Nursing sought to fund the approved applicants
    unable to be funded the previous year. Out of that pool another 21
    programs were able to be funded. This year, 88 programs from 35 states
    have applied for assistance, and again, only a small number will be
    able to be funded at these modest amounts. While the sums of money
    described here are but a drop in the bucket compared to investments
    made by the federal government to underwrite the cost of preparing
    other medical professionals, the loss of this funding would create
    significant problems and erect additional barriers to the effective
    utilization of the most cost effective primary care providers in our
    health care system.
        Likewise, traineeship monies are being utilized by students in all
    50 states and the District of Columbia. These monies are of particular
    importance in the recruitment of nurse practitioners and nurse midwives
    in underserved communities. Again, while the funds fall far short of
    the mark for assisting in the preparation of these important, cost
    effective health care providers in the system, the amounts appropriated
    in the past have helped to reduce barriers for many students desiring
    to become nurse practitioners and nurse midwives. Surveys of nurse
    practitioners and nurse midwives have shown this investment to be a
    good one in terms of assisting students who otherwise might not be able
    to return to school, and in terms of adding providers who care for the
    rural and urban underserved in this country.
        In addition, the need for funding for special projects to evaluate
    the worth, quality and cost effectiveness of nurse managed centers and
    other creative applications of primary care services by nurse
    practitioners and nurse midwives, and the need for continued data
    collection in this realm can only reinforce the fact that the
    appropriations should not only not be cut (as has been proposed in this
    years budget by the administration), but that they should be
    substantially increased if the government is truly seeking methods to
    provide quality, cost effective care to all populations, especially to
    the underserved, as it says.
        While we once again recognize the difficult decisions that must be
    made regarding HHS appropriations for the coming year, it seems logical
    that continued appropriations for nurse practitioner/nurse mid-wife
    educational programs, traineeships and program exploration would still
    be a wise investment.
        We thank the members of the Appropriations Committee for their
    efforts in behalf of nurse practitioners and nurse mid-wives and the
    patients they serve. We know you recognize the value of our services
    and the need for utilizing us in the provision of quality, cost
    effective medical care. It is obvious that we can be part of the
    solution to the current fiscal problems surrounding the provision of
    medical care in this country, and we are asking for your help to
    facilitate the process. If there is anything we can do to provide
    further information or assistance regarding this issue, please feel
    free to call on us.
                                     ______

       Prepared Statement of Renee McLeod, MSN, RN, CS, CPNP, President,
      National Association of Pediatric Nurse Associates and Practioners,
                                      Inc.
        On behalf of the 5,200 members of the National Association of
    Pediatric Nurse Associates and Practitioners, I submit this statement
    for the hearing record to express our views and concerns about the
    proposed consolidation and funding of nurse education programs, funding
    for the National Institute of Nursing Research and the immunization
    programs. We thank the committee for its commitment to funding these
    programs, particularly its strong support for Nurse Practitioners (NP)
    education.
        Pediatric Nurse Practitioners (PNPs) are front line, primary care
    providers specializing in pediatrics who deliver a broad range of
    health care services to children from birth to age 21. PNPs perform
    physical examinations, treat common childhood illnesses, coordinate
    care of chronic illnesses in children, and help families meet other
    important health care needs. In summary, NAPNAP seeks your favorable
    consideration to fund the following programs: Nurse Practitioner/
    Midwife Education of at least $17.588 million; National Institute of
    Nursing Research (NINR) at $65.2 million; and, Immunization Programs at
    least $467.9 million.
        What follows are more extensive remarks providing our views and
    concerns about the above.
    Consolidation of Nursing Education
        In an effort ``to provide comprehensive, flexible, and effective
    authority'' for Federal support of the nursing workforce, the
    Administration's fiscal year 1998 budget proposal includes a provision
    to consolidate Title VIII nurse education authorities. This clustering
    would replace the following nursing programs currently in the Public
    Health Service Act: Advanced Nurse Education (Section 821); Nurse
    Practitioner/Nurse Midwife Training (Section 822), Professional Nurse
    Traineeships (Section 830) and Nurse Anesthetist Training (Section
    831).
        NAPNAP is particularly dismayed that the Administration's proposal
    also reflects a reduction of fiscal year 1997 appropriations by
    $55,488,000, basing their decision on ``market forces already
    reconfiguring the nursing workforce.'' Similarly, the congressional
    authorizing committees are also considering consolidating these
    programs. While the stated goals appear laudable, we are very concerned
    that severely limiting funding while clustering these programs under
    one heading, ``Advanced Practice Nurses,'' is not based on accurate
    data, would do little to serve these goals, and would have the
    unintended effect of diminishing access to health care providers in
    underserved areas and to disadvantaged students.
        PNPs are particularly concerned that the reduction in and
    consolidation of funding under the Administration's 1998 budget
    proposal as well as other proposals to cluster or consolidate such
    programs, would have the following unintended, detrimental
    consequences:
        Consolidation fails to recognize valid distinctions between the
    various advanced practice nursing roles and would decrease
    accountability of funding dollars.
      --While we understand the desire to streamline programs,
            consolidation should not occur at the expense of proven,
            established programs that meet distinct health care needs. For
            example, the Administration's proposal would add case
            management, nursing informatics, and nursing management/
            administration to items funded under this title. These items
            have not traditionally been part of the nurse practitioner
            education programs and for good reason--NPs specialize in
            delivering primary care.
      --Giving authority to the Health Resource Services Administration
            without empirical data on the numbers of, and need for certain
            specialties will result in arbitrary decisions at best, and at
            worst, less politically-powerful groups at risk of losing all
            funding. In addition, assessing outcomes would become more
            difficult under a cluster scheme because groups would not be
            directly accountable for their programs.
        A decrease in funding arising from consolidation would inhibit the
    PNP workforce from meeting the primary care needs of our nation's
    children.
      --While, the health care marketplace has been making strides in
            recent years in promoting the goals of primary care, more needs
            to be done particularly in underserved areas where, without the
            support of government, market demand simply does not elicit
            provider supply.
      --Recently, the Institute of Medicine (IOM) called for fundamental
            changes to improve and expand primary health care in the U.S.
            in order to address the many challenges facing the Nation's
            health care system (IOM Report, ``Primary Care: America's
            Health In a New Era'', 1997). The IOM highlighted the important
            need to coordinate efforts that would promote and enhance
            primary care.
      --There are about 10 million children, nearly 14 percent of all
            children between the ages 1 and 18, who have no health
            insurance (``Sources of Health Insurance and Characteristics of
            the Uninsured: Analysis of the March 1996 Current Populations
            Survey. EBRI Issue Brief. No. 179, November 1996.) Congress is
            now deliberating on ways to provide health insurance and access
            to care for these children. If the efforts are successful, the
            need for PNPs will be even greater.
      --Primary health care is in great demand but is often overlooked by
            the nation's specialists as it does not generate the highest
            salaries. Since PNPs specialize in primary care, much caution
            should be taken to preserve funding directly to PNPs who
            fulfill a distinct public need.
        A decrease in funding for PNPs would impede them from serving in
    health care shortage areas where the need for primary care and
    prevention is often the greatest.
      --While the numbers of PNPs have increased over the years, they are
            still in great demand in rural and underserved areas. If
            funding is consolidated and therefore reduced, fewer PNPs will
            be educated and choosing to practice in disadvantaged areas,
            resulting in decreased access to health care in these areas.
            Underserved areas are, by their very definition, areas which
            lack even the most basic of services including primary care and
            prevention, needs successfully met by PNPs.
      --The recent Council on Graduate Medical Education (COGME) draft
            report notes that NPs and physician assistants may be utilized
            to increase the number of primary care providers in Health
            Professional Shortage Areas (HPSAs). Overall, COGME recommends
            supporting NPs (as well as physicians and physician assistants)
            in order to improve geographic distribution in rural and
            underserved areas.
      --The COGME draft report also provides an update on the work of the
            Joint Workgroup on Primary Care Workforce Projections.
            According to the report, six scenarios were developed to
            project integrated requirements to the year 2005. The model
            projected increased needs for NPs in the range of 12-24
            percent.
        Consolidation would result in heightened battles among advanced
    practice specialties over funding as well as serious inefficiency and
    inequity in funding decisions.
      --The proposal would result in heated battles over APN education
            monies. Since there is yet no empirical data available to
            assess the need or importance of the individual advanced
            practice disciplines, the battles between APN groups would be
            won by the most politically-powerful, not necessarily those who
            can best meet the nation's health care needs. Under this
            scenario, we are certain that federal support for nurse
            practitioners or PNP education could be virtually eliminated.
      --Our experience to date has been that despite the significant demand
            for PNPs within the health care system, few PNP education
            programs have competed successfully for these dollars because
            of the biases that exist within the current funding mechanisms.
            For example, there appears to be a recent trend to fund family
            nurse practitioner programs over PNP education programs because
            of the mistaken belief that a generalist can meet a family's
            entire needs and therefore pediatric specialists are
            unnecessary. This is obviously a concern for us and our
            pediatric clients.
      --The proposal also raises more concerns than it addresses--Who will
            determine the distribution of dollars within the APN groups?
            Will there be separate pools of funds within the cluster for
            each of the various groups? Who will establish the criteria for
            eligibility? How will funding for APN programs be coordinated
            with other health professional disciplines? What began as
            consolidation for administrative simplicity, will turn into a
            more complex and time consuming system.
      --In addition, NAPNAP has promoted the need for the federal
            government to perform integrated, workforce projections
            accounting for both physicians, PNPs/NPs and physician
            assistants. We strongly believe that this work will assist us
            in projecting which and what number of professions can best
            serve the nation's health care needs. Without that information,
            a reconfiguration of funding for these specialty areas is
            premature and not good public policy.
        In conclusion, NAPNAP asks that the committee oppose the proposed
    consolidation of nursing programs in the Public Health Service Act with
    respect to funding NP education programs. Such consolidation fails to
    recognize important distinctions in specialties, thereby, inhibiting
    PNPs' ability to meet the primary care needs of our nation's children
    particularly in underserved areas. Further, consolidation would
    engender inefficiencies, inequities, and poor public policy in nursing
    education. NAPNAP appreciates the Committee's past support and
    recognition of the important contributions nurse practitioners make to
    our society. NAPNAP requests that the committee fund the NP/Midwife
    education program to last year's funding level of $17.588 million.
    National Institute of Nursing Research (NINR)
        NAPNAP supports the National Institute of Nursing Research (NINR),
    a particularly dynamic and vital arm of the National Institutes of
    Health (NIH). NINR is essential in promoting those values that we nurse
    practitioners hold so dearly--prevention, wellness, the holistic
    approach to patient care, and scholarly nursing research which seeks to
    improve patient outcomes and the quality of life. In its research
    efforts, NINR targets vulnerable populations including minorities,
    children, and adolescents to develop health education models that lead
    to successful prevention, intervention, and early diagnosis and
    treatment. NINR is also at the forefront of developing and testing
    strategies to reach those at risk for contracting the AIDS virus.
        As such, NAPNAP supports an increase of 9 percent in fiscal year
    1998 over last year's $59,743,000 NINR appropriation, for a total of
    approximately $65,200,000. We support this figure as NINR's purpose and
    track record are of solid nursing research which leads to strategies
    that not only improve the profession, but also vastly improve public
    health.
    Immunization
        NAPNAP is also greatly concerned about the immunization of our
    nation's children as vaccinations protect children from deadly diseases
    such as measles, whooping cough, and rubella, while dramatically
    reducing overall health care costs. While significant progress has been
    made over the past 10 years alone with immunization levels at their
    highest level ever recorded (a total of 76 percent), more than one
    million children aged 19-35 months are not immunized. We have only
    three short years to reach the Year 2000 goal of immunizing 90 percent
    of infants by the age of 2.
        Of utmost importance are the benefits and breakthroughs in
    vaccination. This year alone, a new schedule using both Inactivated
    Polio Vaccine (IPV) and Oral Polio Vaccine (OPV) which is even safer
    than the previous use of only OPV is being recommended. Also, the
    recently approved use of the diphtheria/tetanus/acellular pertussis
    (DTaP) vaccine for infants is being lauded for its lower incidence of
    adverse events. As such, support for such efforts and in reaching our
    Year 2000 goals are crucial to NAPNAP. NAPNAP recommends funding
    immunizations at $467,900,000, the same level as in fiscal year 1997,
    and opposes the $41 million reduction in the President's proposal
    considering there is no legislative proposal that would engender the
    projected savings and such tinkering might threaten the stability of
    the immunization program.
        Thank you for the opportunity to provide written testimony to your
    Subcommittee. NAPNAP is mindful that this year is one in which there is
    even more pressure to cut programs. However, these three priorities--
    support of nurse practitioner education and training, NINR funding, and
    immunizations--combine into a vital investment towards protecting our
    nation's most vulnerable citizens, our children.
                                     ______

             Prepared Statement of the American Dental Association
        Mr. Chairman and Members of the Subcommittee: The American Dental
    Association is submitting this testimony on behalf of its 140,000
    members. The ADA thanks the Subcommittee on Labor, Health and Human
    Services, Education, and Related Agencies for this opportunity to
    submit testimony on federal dental programs.
        The Association would like to publicly thank this Committee and
    especially Senator Kit Bond for his steadfast support last year for the
    restoration of the Division of Oral Health (DOH) within the Centers for
    Disease Control and Prevention (CDC). As Sen. Bond knows, the DOH plays
    a pivotal and unique role in many programs designed to educate the
    nation about oral health diseases and helps communities undertake
    prevention measures. Two areas where support for DOH will make an
    immediate difference--the development of statistics and research
    necessary to help fight the rise of oral cancer in this country, and
    support for expansion and upkeep of public water system fluoride
    programs--are very necessary components of efforts to enhance the oral
    health of the American public and may only take place if the agency is
    adequately funded for fiscal year 1998.
        The ADA would also like to thank the committee for its support of
    the Maternal and Child Health program. We are very pleased to note that
    the Department of Health and Human Services responded favorably to the
    committee's directive in last year's report language asking that more
    money be made available to the seven states with public water system
    fluoridation rates below 25 percent. We hope to do more this year.
                                dental education
    General Dentistry Program:
        The Association thanks the Committee for supporting the Health
    Professions Programs. Included in these programs is the General
    Dentistry program which is a win-win proposition. Dentists gain
    clinical experience in a training program that is analogous to that
    experienced by primary care physicians in their residencies, and the
    care is provided to underserved populations and communities. In fact,
    the General Dentistry program has been successful in meeting the
    federal goal of increasing access to primary care not only because it
    serves as a dental care ``safety net'' for the elderly, disabled, and
    medically compromised; but also because most graduates of the program
    remain in primary care, many establishing practices in underserved
    areas.
        The ADA recommends that $6 million be appropriated for fiscal year
    1998 for the General Dentistry Program.
    Loan Repayment Program:
        Historically, dentistry has not received a proportionate share of
    the National Health Service Corps (NHSC) positions. Limiting this
    option could close the door to a career in dentistry for those who are
    often most willing to commit to a lifetime of service in underserved
    areas. And many dentists are willing to stay to serve a population that
    still does not receive regular dental care. This is vitally important
    because oral health problems are reported as the number one health
    concern in migrant programs.
        The Association is willing to work with the Department of Health
    and Human Services to assist in the identification of dental needs in
    communities and populations seeking designation as a Health
    Professional Shortage Area. We ask that the subcommittee support the
    ADA's efforts to increase the number of loan repayment positions
    awarded to dentists.
    Ryan White HIV/AIDS Dental Reimbursement Program:
         The Ryan White HIV/AIDS Dental Reimbursement program makes
    available vitally needed oral health care to people living with HIV/
    AIDS, while providing dental students and residents with extensive
    experience in caring for patients with special dental needs. In fiscal
    year 1996, 102 institutions participated, serving over 70,000 patients.
        Because of their impaired immune systems, people living with HIV/
    AIDS suffer a high incidence of oral disease, which if untreated, can
    lead to significant pain, oral infections, and fevers; difficulty in
    eating, speaking or taking medication; and medically dangerous weight
    loss. Receiving a prompt diagnosis and appropriate treatment for these
    oral conditions is often difficult for uninsured individuals because
    virtually all dental services are not reimbursed under Medicare and are
    seldom covered by Medicaid. By covering the costs of providing quality
    care to people living with HIV/AIDS, this program can prevent much more
    serious and expensive health complications.
        The Association requests $9 million for the HIV/AIDS Dental
    Reimbursement program.
    Minority and Disadvantaged Assistance Programs:
        The ADA recommends increased funding for the Disadvantaged
    Assistance program (Health Careers Opportunity Program/Federal
    Assistance for Disadvantaged Health Professions Students), and the
    Exceptional Financial Need Scholarships (EFN) and Scholarship for
    Disadvantaged Students (SDS) programs. These funds help recruit and
    retain minority and disadvantaged students.
        The Association believes that increased funding levels are
    important to foster diversity in the student population. Assisting low-
    income families and minority students is necessary as current dental
    education costs often exceed $67,000 for a four-year period. The ADA
    recommends $35 million for the Disadvantaged Assistance program, $15
    million for the EFN, and $20 million for the SDS programs.
                                dental research
        The National Institute of Dental Research (NIDR) supports research
    concerning disorders, diseases, and normal development that affect
    tissues of the craniofacial-oral-dental complex. The scope of NIDR
    research includes oral cancers, infectious diseases (e.g. AIDS), and
    chronic and disabling disorders such as bone and joint diseases.
        These diseases and disorders cause untold pain and suffering for
    those afflicted, but they also adversely affect our society as a whole,
    reflected in increased health care costs and loss of productivity. For
    example--one in every 33 babies born in 1995 had at least one
    anatomical birth defect, three-fourths of which affected the head,
    face, and neck. The most common craniofacial defect is cleft lip,
    affecting one in 500 births. Lifetime costs for the repair of clefs and
    treatment for associated speech, hearing and other problems are
    estimated to be $100,000 per patient. In addition--oral, pharyngeal and
    laryngeal cancers affect 42,000 Americans annually, resulting in 9,000
    deaths every year.
        On the other hand, improvements in oral health, attributable at
    least in part to dental care research, save $4 billion in dental care
    costs annually. Future savings must necessarily depend to some degree
    on continued research. For example--in fiscal year 1996, NIDR funded
    four new Oral Cancer Research Centers with plans to develop ``smart''
    therapies, such as treatments designed to reactivate tumor-suppresser
    genes, or causing cancerous cells to self-destruct. NIDR has also long
    been a leader in pain research. In fact, the NIDR Director has
    established a trans-NIH Pain Research Consortium to encourage
    information sharing and collaborative research efforts within NIH. Some
    diseases or disease treatments cause chronic pain at an estimated cost
    of $100 billion a year according to pain specialists, so the benefits
    emanating from the agency's efforts in this arena should reach far
    beyond oral health care concerns.
        Certainly, the continued adequate funding of NIDR is necessary and
    cost-effective, as it helps ensure continued advances in oral care
    treatment and research into disorders and diseases that are very costly
    to society. The ADA requests that the subcommittee appropriate $212.5
    million in funding for NIDR in fiscal year 1998.
                               disease prevention
        The Division of Oral Health (DOH), Centers for Disease Control and
    Prevention (CDC), is the federal agency with primary responsibility for
    community-based programs aimed at preventing oral disease and promoting
    oral health, and for applied research to enhance oral disease
    prevention within the community. The DOH continues to serve as the
    federal agency responsible for developing infection control
    recommendations for dentistry. For example, the ADA has collaborated
    with the Division in developing infection control guidelines for
    hepatitis B, AIDS and tuberculosis.
        Preventing oral cancer is one of the Division's major areas of
    concern. Each year, there are more than 30,000 new cases of oral and
    pharyngeal cancer. And each year, these diseases kill more people than
    does cervical cancer, malignant melanoma, Hodgkin's disease and other
    well known cancers (about 8,000 lives lost). In addition, the survival
    rate for these cancers is one of the lowest--only about 50 percent,
    early detection has demonstrated to increase the survival rate
    (approximately 75 percent).
        Funding is essential for the DOH to work with the states to develop
    state-specific plans for preventing and controlling oral and pharyngeal
    cancers in high risk populations. With additional resources the DOH,
    working with states, could enhance public and provider education,
    develop and evaluate early detection and screening protocols, and build
    capacity with voluntary partners that will extend support for
    prevention and early detection capabilities.
        Severe tooth decay (caries) is another major priority for the
    Division. Despite the fact that with the effective application of
    currently available prevention strategies, caries is almost entirely
    preventable, 53 percent of children ages 6-8 and 78 percent of 15-year-
    olds have experienced no dental caries. Further, the highest burden of
    disease is in the underprivileged children in our society. More than
    100 million Americans lack the benefits of fluoridated water despite
    its proven effectiveness in fighting dental decay. For 20 years, the
    CDC has provided leadership in improving the quality of community water
    fluoridation, assessing the risks and benefits of fluoride, and
    extending this population-based preventive measure to new communities.
    Current efforts include examining the role of water fluoridation in
    ensuring appropriate fluoride exposure, as well as implementing the
    Public Health Service National Fluoride Plan. Dental sealants, another
    proven preventive strategy, is grossly underutilized in U.S. children
    (<20 percent).
        The CDC works closely with state and local governments to develop
    and implement prevention and control efforts including community water
    fluoridation and dental sealant initiatives. However, much remains to
    be done. Increased technical support and oral health grants to state
    and local health departments would have very positive effects on the
    nation's oral health and produce substantial cost savings nationwide.
        The Association recommends an additional $2 million above the
    current funding level for the DOH.
                   agency for health care policy and research
        The Agency for Health Care Policy and Research (AHCPR) can
    facilitate the introduction of advances in biomedical research into the
    dental practice setting, improving the quality and cost-effectiveness
    of oral health care. In the current health care marketplace, forces are
    at work producing dramatic changes and pressures on patients and
    providers, and the effects on quality of care and patient well-being is
    of concern. The dental profession, public, and policy makers do not
    have the information needed to assess or predict the impact these
    changes will have on cost, quality and access.
        It is important to provide sufficient funds for continuation of the
    Medical Expenditure Panel Survey (MEPS), which began in 1997. In
    assessing information gained from the most recent (1987) AHCPR
    expenditure survey, the Association noted that the survey provided much
    less comprehensive or reliable information about dental care than was
    provided about other health care. The Association supports the budget
    necessary to field this survey, but recommends that the dental care
    component of this survey be improved, so as to provide more accurate
    estimates of utilization patterns, composition of services, and costs
    of care and how these are influenced by characteristics of patients,
    providers, and insurance plans.
        The findings from research supported by NIH and AHCPR are openly
    shared within the scientific and professional communities to maximize
    the benefits to the public of this investment. There must be support
    for a continuum of research--from basic, biomedical (bench), and
    clinical research, through controlled clinical trials, outcomes
    research, and cost-effectiveness trials. We must understand not only
    what causes diseases and how they can be prevented or treated, but also
    what works in dental practice and how much it costs. Research supported
    by AHCPR will assist dental practitioners by providing the evidence
    base for selecting among alternative dental treatments. AHCPR's
    research is also needed to improve the system providing health care, so
    that the fruits of biomedical research are readily available to all
    citizens.
        The Association supports the expansion of AHCPR's outcomes and
    effectiveness research program, which has the potential to improve the
    evidence base for selecting among alternative diagnostic and dental
    treatments. Advances in this program, for example, would enable AHCPR
    to improve the treatment of musculoskeletal disorders, including
    temporomandibular disorders (TMD), improving the science base for both
    medical and dental practitioners and providing information needed to
    establish reimbursement policies that would enable patients to receive
    the treatment most appropriate for their needs. An increase would also
    enable AHCPR to improve the quality and cost-effectiveness of care for
    children and adolescents.
        The Association recommends an fiscal year 1998 funding level of
    $160 million.
        The Association thanks the Committee, for its thoughtful
    consideration of the ADA's recommendations.
                                     ______

       Prepared Statement of Robert C. Young, M.D., President, Fox Chase
                                 Cancer Center
        Albert Einstein once said, ``Things should be made as simple as
    possible, but no simpler.'' This is the crux of the problem with
    mammography for women 40-50 years of age. For women above 50, the
    message is clear and unequivocal. Regular mammography reduces breast
    cancer mortality by 30 percent. Simply put, mammography saves lives.
        For women in the 40-50 year age group, the scientific data are less
    clear. The results of the studies done to date have been at best murky.
    Several of the smaller studies show little benefit; others show none at
    all. The most positive results, derived from a large Swedish study,
    demonstrate a 12 percent reduction in mortality for women in this age
    group who were screened every two years. That mortality reduction did
    not become apparent until eight years after the randomized trial began.
    Prior to that, screened and unscreened women had identical breast
    cancer death rates.
        No one wants it to be this murky, but neither should anyone be
    surprised. The risk of breast cancer increases steadily with age. For
    women under age 40, without other risk factors, the risk is quite low
    and there is no convincing argument for mammography screening at all.
    For women over 50, the case for screening is open and shut. It is
    inevitable, however, when dealing with a rising increase in risk, that
    at some point there will be a gray area, an intersection at which the
    convergence of various factors make it difficult to arrive at clear
    cut, unambiguous conclusions. For mammography screening, that gray zone
    occurs between the ages of 40 and 50. The factors which contribute to
    the confusion are lower incidence of breast cancer in women of this
    age, difficulty in detecting the disease because of the nature of the
    breast tissue, and differences in the biology of the tumors themselves.
    Because of these compounding factors, small or short-term studies yield
    equivocal and even misleading results. Much larger, long-term trials
    are required to demonstrate the smaller effect anticipated in this age
    group. In that regard, it is noteworthy that the largest and longest
    trials show the most positive result.
        We should not, however, allow ourselves to be paralyzed or to
    become equivocal because not all of the trials demonstrate that
    mammography reduces mortality in women age 40-50. Nor do I think it is
    adequate for the medical profession to throw the issue back at women
    and tell them to make their own decisions. A number of very well
    designed, large studies, most notably those done in Sweden, have shown
    a small, but definite improvement in survival. They even suggest that
    the more aggressive nature of breast cancer in younger women might
    require annual rather than biannual screening in order to be most
    effective in extending lives. To my mind that is sufficient
    justification for not only continuing screening for women in this age
    group, but also for encouraging them to be screened regularly.
        The reality is that public health guidelines cannot and should not
    ever be based exclusively on the existence of unequivocal scientific
    data. Guidelines are just that--guidelines. Even when reasonable people
    disagree, as they frequently do in science, the purpose of guidelines
    is to give people the best advice, not the purest. Guidelines must be
    clear and understandable and not weighed down by the conditional
    statements and conflicting conclusions. But prudent guidelines should
    always balance benefit with risk. In the particular instance of
    mammography in 40-50 year olds, while the benefit is small, the risks
    appear to be minuscule. There is little or no evidence that screening
    inflicts any physical harm on the women who undergo it. The argument
    against mammography screening then becomes largely economic--the
    dollars spent for mammograms and follow-up examinations to detect a
    relatively small number of breast cancer cases. From this perspective,
    most women and their doctors would opt for the small, but well defined
    benefit. And as a society, I believe that we have already made the
    choice to invest in mammography as a means of saving the lives of our
    wives, mothers, sisters and daughters. I believe this investment should
    include those women 40 to 50.
        There are other investments we need to make as well. We need to
    continue to improve mammography technology to make it a more sensitive
    and valuable tool than it already is. But even the best applications of
    mammography will not solve the breast cancer problem, and it will not
    save the women whose disease cannot be picked up by mammography. For
    these women with breast cancer, we need new tools and better
    understanding of the basic biology of breast cancer so that we can
    identify those individuals who are truly at risk and develop better
    screening, prevention and treatment techniques. The answers to the
    questions posed here today about the efficacy of mammography screening
    in women 40-49 are not likely to come from more of the same studies.
    Ultimately, the solutions will be found in research that addresses the
    more fundamental questions and leads to new ways to prevent or
    eliminate this terrible killer of women.
        Thank you for your time and attention.
                                     ______

     Prepared Statement of Erin Bosch and Kate Klugman, National Coalition
                         for Heart and Stroke Research
        The National Coalition for Heart and Stroke Research is a group of
    organizations with missions related to heart disease and/or stroke. The
    purpose of the coalition is to increase public awareness about heart
    disease and stroke research, and to impact the process by which funding
    levels for heart disease and stroke research are determined, in favor
    of increased allocations.
        This coalition includes the following organizations: the American
    Academy of Neurology, the American, the Academy of Physical Medicine
    and Rehabilitation, the American Association of Neurological Surgeons,
    the American College of Cardiology, the American Heart Association, the
    Americans for Medical Progress, the Congress of Neurological Surgeons,
    the American Neurological Association, the Association of Black
    Cardiologists, Citizens for Public Action on Blood Pressure and
    Cholesterol, Inc., Mended Hearts, Inc., the National Stroke
    Association, the North American Society of Pacing and
    Electrophysiology, the Society of Cardiovascular and Interventional
    Radiology, and The Stroke Connection, Inc.
        The honorary celebrity committee of the coalition includes Red
    Auerbach, NBA Manager; Robby Benson, Actor; Sid Caesar, Actor; Jack
    Carter, Actor/Comedian; Mike Ditka, Former NFL Coach; James Garner,
    Actor; Bob Keeshan, ``Captain Kangaroo''; Larry King, Talk Show Host;
    Walter Koenig, Actor; Patricia Neal, Actress; Bill Parcells, NFL Coach;
    Regis Philbin, Talk Show Host; Dan Reeves, NFL Coach; Rod Steiger,
    Actor; and Joe Torre, Manager, New York Yankees.
        Hello. My name is Erin Bosch. I am here on behalf of the National
    Coalition for Heart and Stroke Research. Six months ago tomorrow I was
    in Minnesota having open heart surgery at the Mayo clinic. I have a
    genetic disease called hypertrophic cardiomyopathy. It causes the
    muscle below my aorta to balloon out and partially blocks the flow of
    blood. This disease causes high risk for heart attack and sudden death
    from dangerous heart rhythms. The surgery I had is designed to lessen
    the obstruction by shaving away some of the muscle. This procedure was
    originally pioneered at the National Institutes of Health. My surgery
    was our last resort aside from transplanting. Before this surgery NIH
    had implanted a therapeutic pacemaker in me because they had been shown
    to reduce the obstruction caused by the extra heart muscle. Without
    adequate funding for research these options would not have been
    possible for me. Most people think heart disease is a problem that only
    affects older people. But, I am living proof they are wrong. According
    to recent studies, 36 percent of young athletes who die suddenly have
    Hypertrophic Cardimyopathy. Congenital heart disease is still the
    number 1 birth defect of children. Your child or grandchild could be
    born with heart disease. Thank you for the opportunity to speak to you
    today. I am hopeful that you will not forget about young people like me
    who depend on you for adequate funding for heart research so that we
    can live long productive lives.
        Mr. Chairman, honorable members of the Committee, it is a privilege
    to speak to you today. My name is Kate Klugman. I am here on behalf of
    the National Coalition for Heart and Stroke Research, I am representing
    over 5 million volunteer, and most importantly, I am a mother, and a
    wife. I know many people feel skeptical about Congress. Many people
    believe that government can do no good and that everything in
    Washington is all about the all mighty dollar. I am here to say that
    THEY are wrong. You as a body have done great things for those
    unfortunate people, who through no fault of their own, are sick and in
    real need of real help. The American's with disabilities act, and the
    help you have given to research, to prevent cure, and lessen the
    effects of stroke and heart disease, are some of the finest things to
    ever come out of any government.
        I know you face hard challenges in today's world, what you spend
    here, you can not spend there. You are faced with very, very difficult
    choices. But, the true measure of a society, is how it treats the least
    of its members, how it cares for the sick, and the needy.
        I am only 34 years old, and before my devastating stroke in June,
    of 1995, I was a mother, a wife, an athlete and person vitally
    interested in my community. Now, after suffering a double brain stem
    ponds stroke, which left me totally paralyzed, unable to even blink,
    after a miraculous recovery, I am still a mother, a wife, and someone
    vitally interested in a broader community. Only now, I am all these
    things without the use of the left side of my body.
        Without the funding, you have already given to fight stroke and
    heart disease; I would be none of these things. After my stroke, I
    suffered from locked in syndrome. I spent 50 days in the ICU. During
    those 50 days, I was conscience, I could feel everything, I could feel
    pain, but I could not move any part of my body. I was totally trapped
    in my body. Fed by a tube surgically placed in my stomach, breathing
    only by using a tube surgically placed in my throat. I could not speak,
    could not eat, could not drink, and could not move, from the ridged
    death like position my body had assumed.
        There was little hope for me to even live through the night, and
    frankly, my doctor hoped I would not live, since my future appeared so
    bleak. I am a very lucky woman. I lived, and more than that I overcame
    the locked in syndrome
        My miracle did not come about without much prayer, and much
    knowledge, and great skill on the part my doctors. The knowledge and
    skill my doctor's possessed is something that this Government, acting
    at it's best, helped make possible. Without years of research and many
    dollars provided by men and women like you. I would not be here to talk
    to you today.
        Of course, the story does not end with my leaving ICU; it only
    begins there. I have been through countless hours of therapy. Physical
    therapy has been developed to its present stage with the help of the
    funds provided in part by this government.
        I have seen my own life come to a point where I could do nothing
    for myself. I found myself at 33 wearing a diaper unable to control my
    own bodily functions. I saw myself unable to talk for months, all the
    communication I had with the outside world, was limited to my blinking,
    yes and no. I will not mention the physical pain for it was transitory.
        The tears of my daughters 18-month-old Rachel and 3-year-old
    Stephanie would be enough if you saw them, to convince you to fund
    research as one of your top priorities. If you could see what this has
    done to my husband and other friends you would realize that Stroke and
    heart disease is not just a problem that strikes one person, it strikes
    families, and whole communities.
        Every Minute in the United States someone suffers a stroke.
    Annually stroke strikes more people than cigarette smoking kills. Each
    year over 500,000 people have a stroke, nearly a third will die with in
    a few months. Almost all of the survivors will be disabled for the rest
    of their lives. Heart disease and stroke will cost this nation over 259
    billion dollars in medical expenses and lost productivity in 1997. If
    we hope to save Medicare, which is one of this Congress's top
    priorities we must learn to spend medical dollars wisely. With research
    we can prevent and cure stroke thus saving billions of dollars and in
    the bargain saving innocent people from a living death.
        There is no greater good that you as a Congress could possible do
    than to help the dedicated men and women who fight daily to prevent and
    to cure stroke and heart disease. I pray you will generously help us. I
    will close by asking you to be just a little selfish for if I can stand
    here today, when yesterday I was the picture of health, so can you
    stand here tomorrow also the victim of Stroke. I pray it will not
    happen to you, but the truth is within the next 10 years it will happen
    to some of you, and it may happen to all of you. So, please help, for
    in helping any of us, you help all of us.
                                     ______

     Prepared Statement of Ritchie L. Geisel, President, Recording for the
                               Blind and Dyslexic
        Mr. Chairman, Senator Harkin, Members of the Subcommittee:
    Recording for the Blind and Dyslexic (RFB&D) is pleased to submit this
    statement and accompanying fact sheet in support of our request for
    continued federal support of our mission as the nation's primary
    producer of recorded textbooks for people of all ages who cannot use
    standard print because of a visual, perceptual or physical disability.
    We also welcome this opportunity to thank the members of the
    subcommittee for the continuous support which you have shown for RFB&D
    since our first federal assistance began in 1975. With this support, as
    well as the support we receive through private philanthropy, our
    organization this last year circulated more than 225,000 textbooks,
    free of charge, to more than 40,000 disabled students.
        RFB&D, founded in 1948 as a service for returning blind veterans of
    World War II, has grown into a national, private, volunteer-based
    organization which serves as the national education library for people
    who cannot read standard print because of a disability. Located in
    Princeton, New Jersey, with volunteer readers spread throughout the
    United States, RFB&D distributes textbooks and other educational
    materials in accessible audio and digital formats. Our tape and digital
    library includes more than 75,000 titles and is constantly updated to
    meet the needs of our student and professional users.
        Our request to the subcommittee for fiscal year 1998, our 50th
    anniversary year, is for an appropriation of $5,500,000, an increase of
    $1,000,000 over the amount provided by the Congress last year. This
    federal subsidy, approximately 25 percent of our total operating
    budget, will be used for two principle purposes. First, our principle
    need is for increased resources to meet the demand of a growing user
    population, particularly a rapidly expanding population of students
    with severe dyslexia. By the year 2000, only three years from now,
    RFB&D expects the number of borrowers to increase by almost 90 percent,
    with more than 75,000 students dependent on us for their textbooks.
    Since these students are entitled by both the Americans with
    Disabilities Act (ADA), and the Individuals with Disabilities Education
    Act (IDEA), to appropriate educational materials, RFB&D believes that
    our federal appropriation represents an appropriate contribution
    towards this cost. Because our highly trained readers are volunteers,
    RFB&D is able to meet this need at a fraction of what it would cost
    government, whether local or federal, if it were required to produce
    these textbooks on their own.
        The second purpose for the increase that we are requesting this
    year, is to begin a multi-year effort to convert our existing analog
    system of recordings to a new generation of digital technology. This
    new technology will be the basis for our service in the 21st century.
    The advantages of digital technology, which was demonstrated to this
    and other committees by our research staff in January, will be two-
    fold. First, it will allow our students to search and move around
    within a textbook in the same ``random'' way as sighted students do
    within their textbooks. Currently, RFB&D students must scroll through
    tapes longitudinally in an awkward and slow process. In addition to
    providing this ``searchability'', use of digital technology will
    eventually permit books to be circulated on CD-ROM and electronically
    through the Internet, eliminating the need for expensive reproduction
    of cassettes, their packaging and shipping.
         Mr. Chairman, RFB&D and its student users are grateful for the
    support the Committee has provided in the past, and are hopeful that
    you will be able to approve our request for $5,500,000 for fiscal year
    1998. This level of support will assist RFB&D to continue our joint
    efforts to serve the educational needs of disabled students throughout
    the United States.
        Fact Sheet Recording for the Blind and Dyslexic  (RFB&D) Special
                    Education, Media and Captioning Services

    ------------------------------------------------------------------------
               Fiscal Year                 Base      Technology     Total
    ------------------------------------------------------------------------
    1997 Appropriation...............   $4,500,000  ...........   $4,500,000
    1998 President...................    4,500,000  ...........    4,500,000
    1998 RFB&D Request...............    5,000,000     $500,000    5,500,000
    ------------------------------------------------------------------------

        Recording for the Blind and Dyslexic (RFB&D) is the nation's
    primary producer of recorded textbooks for people of all ages who
    cannot use standard print because of a visual, perceptual or other
    physical disability. Books from its master tape library are loaned,
    free of charge, to users throughout the United States. In 1995, over
    200,000 books were sent to more than 37,000 users. The number of RFB&D
    books produced for, and circulated to, students has grown substantially
    in recent years and is expected to continue to grow in the future (see
    box). RFB&D is supported principally through private, charitable giving
    and volunteer labor, but has received support from the Department of
    Education continuously since 1975.
                      Recording for the Blind and Dyslexic

    ------------------------------------------------------------------------
                                                                      2000
                                                1990       1995      (est)
    ------------------------------------------------------------------------
    Students...............................     23,287     37,176     75,000
    Books Loaned...........................    143,020    214,621    400,000
    ------------------------------------------------------------------------

        In January of this year RFB&D supplied to the Appropriations
    Committees, at their request, a report on its long range, financial
    plan for support of its activities. This report outlines the increased
    level of support required to finance the growing needs of the student
    community that it serves. In this report RFB&D assumes that the
    majority of the growth in its operating budget will continue to be
    financed by the private sector, but it also requests that Federal
    support grow in tandem with private funding. The additional $500,000 in
    RFB&D's fiscal year 1998 request to the Congress for operations will
    permit it to continue to meet the growing need for its services to
    blind, severely dyslexic and physically disabled students.
        In addition to the increase for its normal operations, RFB&D is
    requesting $500,000 in fiscal year 1998 to begin a three-year project
    to convert its operations from an analog tape system of recording to
    new digital technology. This change will have two principal advantages.
    First, it will allow visually-impaired students to search and move
    around within a textbook in the same ``random'' way that sighted
    students search their print books. Currently, RFB&D students must
    scroll though tapes longitudinally in an awkward and slow process. In
    addition to providing this ``searchability'', use of digital technology
    will eventually permit textbooks to be circulated on CD-ROM and
    electronically through the Internet, eliminating the need for expensive
    reproduction of cassettes, their packaging and shipping.
                                     ______

     Prepared Statement of John W. Suttie, Ph.D., President, Federation of
                  American Societies for Experimental Biology
         Mr. Chairman, Mr. Harkin, Members of the Subcommittee: I am John
    Suttie, professor of biochemistry and nutritional sciences at the
    University of Wisconsin. I also serve this year as the President of the
    Federation of American Societies for Experimental Biology, usually
    referred to as FASEB. It is as President of the Federation that I
    submit this statement in support of adequate funding for the National
    Institutes of Health, a cause for which the Chairmen and members of
    this subcommittee have strongly supported and championed on a bi-
    partisan basis.
        FASEB, for those of you who are not familiar with the organization,
    is a coalition of 14 societies with a combined membership of more than
    43,000 individual scientists who work in the life sciences. The
    Federation was created in 1912 to provide an organization which could
    represent the views of the basic scientist in the science policy
    debates of its day. This remains more than 80 years later the
    fundamental purpose for the existence of our Federation.
        FASEB has joined with nearly 200 organizations who are advocates
    for biomedical research in asking this Subcommittee to continue its
    strong leadership on behalf of biomedical research, and approve an
    increase in funding for the NIH for fiscal year 1998 of 9 percent. As
    you are aware, this is the level the NIH has identified through its
    professional judgment process as the amount it believes can be
    effectively used next year.
        Our partnership with the Ad Hoc Group for Medical Research Funding,
    and other members of the health research advocacy community, goes much
    deeper than endorsement of a common advocacy goal. While each sector of
    the research establishment brings its own different perspective to this
    debate, all are involved in one overarching goal--progress against the
    diseases and disabilities that continue to afflict our people and,
    indeed, the people of the world.
        Among those presenting testimony to this subcommittee, whether
    families fighting juvenile diabetes, Parkinson's caregivers, victims of
    breast cancer or AIDS, or young adults suffering from Cooley's Anemia
    or Muscular Dystrophy, are groups representing the causes that the
    biomedical science community is committed to. While we are
    practitioners of molecular biology, biochemistry, anatomy, and other
    basic sciences, our cause is to apply our science to the reduction of
    human suffering caused by disease.
        The basic message of these patient advocates and the scientists
    whom I represent is, therefore, the same. Investment in biomedical
    research is the first and critical step in prevention, treatment and
    control of disease, which, in turn will lead to longer, healthier and
    more active lives. Without adequate funding of the NIH, progress will
    be slowed and suffering will be prolonged.
        As this subcommittee reviews our request for a 9 percent increase
    in funding for next year, we believe you should do so in the context of
    the remarkable accomplishments that past investments in the NIH have
    produced. FASEB has described a number of these in detail in the
    written materials previously distributed to the subcommittee, as have
    other witnesses.
        I believe that one example is typical of the opportunity created by
    this country's biomedical research investment. This example relates to
    skin cancer, the most common form of cancer affecting more than 750,000
    Americans each year. In recent research, with enormous implication for
    all of oncology, mutations in a recently isolated human ``patched''
    gene have been linked to development of many forms of skin cancer. As a
    basic scientist, I have chosen this case study to discuss because the
    findings, related to a particular human disease, followed from the
    discovery of a similar gene in fruit flies. This is an excellent
    example of the importance of basic research, which at its onset would
    not have been identified as of special interest to cancer research.
    Further understanding of this gene's role in cancer development will be
    a critical factor in cancer diagnosis, prevention and treatment. Other
    recent examples of how basic, untargeted research provides benefits for
    biomedical applications include drugs for treating AIDS and a test for
    screening blood for HIV. I believe these examples are typical of the
    quality of science that you can expect from continued investment in the
    NIH.
        Mr. Chairman, in our role as spokesmen for working scientists, we
    at FASEB write not only as advocates for biomedical research funding,
    but also to express our views on the approaches we, as scientists,
    believe will lead to the most productive science in the public
    interest. It is for this reason that our recommendations focus not only
    on the budget, but also on the methods for allocating funds among
    programs and diseases--the so-called system of ``prioritization'' of
    NIH funding. This issue recently has been the subject of hearings
    before the Senate Labor and Human Resources Committee, and has also
    been discussed widely by members of other committees.
        While I will not address the issue in detail here, I would be
    remiss if I did not take this opportunity to encourage the
    subcommittee, as it reviews this important question, to defer to the
    NIH itself the basic responsibility for allocating appropriations among
    different diseases and program areas.
        As this subcommittee well understands, the decision to allocate
    funding to one area inevitably results in less to another--whether
    another disease or another avenue of basic science. Yet, I believe that
    most of us also understand that these decisions cannot be made using
    simple mathematical models, comparisons, or other purely quantitative
    measures. While these factors provide useful benchmarks of relative
    effort, allocation decisions are fundamentally matters of ``judgment''.
    As scientists who understand the complexity of the process of
    discovery, FASEB believes this ``judgment'' must not be dominated by
    the emotion and politics that inevitably present themselves to the
    Congress when it looks at the human suffering associated with various
    diseases. It is our belief, therefore, that the leadership at the NIH,
    in consultation with the Congress and with the public, is in the best
    position to make these Solomon-like choices. As a member said earlier
    this year, let ``the science call the shots''--not science in a vacuum
    but science managed by the most broadly informed science managers with
    a constant goal of improving human health.
        Mr. Chairman, we have previously distributed to the subcommittee
    other recommendations of the Federation in several areas under your
    jurisdiction. In the interest of space, I will not cover all of these
    in my statement at this time.
        There is, however, one other issue which I want to touch on
    briefly. This is our concern regarding the use of animals in research.
    The role of animals remains critical to understanding the fundamental
    processes of life and to developing treatments for injury and disease.
    Compassionate, humane treatment of animals is also important. The
    members of FASEB recognize that Americans want both the benefits of
    medical research using animals and the assurance that such research is
    being conducted according to the highest scientific and ethical
    standards. While FASEB urges that Congress impose no undue restrictions
    on the use of animals in research, at the same time we support rigorous
    enforcement of existing animal welfare laws. We believe this is the
    best way to ensure the proper balance in the protection of animals and
    the needed advancement in human research that is possible only with
    responsible use of animals by the biomedical research community.
        In conclusion Mr. Chairman, we at FASEB believe that the continuum
    of scientific discovery now makes possible real breakthroughs in many
    areas of human health. But continued robust support is necessary if
    this potential is to be realized. We at FASEB know you and this
    subcommittee share our commitment to this cause and will make every
    effort to provide to the NIH the resources that are needed.
        Our detailed recommendations are included in the written report
    previously submitted to the committee. Mr. Chairman, this concludes my
    statement.
                                     ______

      Prepared Statement of the Health Professions and Nursing Education
                                   Coalition
        The Health Professions and Nursing Education Coalition (HPNEC) is
    pleased to have this opportunity to comment on the fiscal year 1998
    funding for the health professions and nursing education programs
    authorized under Titles VII and VIII of the Public Health Service Act.
    HPNEC is an informal alliance of nearly 40 national organizations (list
    attached) comprising a variety of schools, programs, and individuals
    dedicated to educating professional health personnel. HPNEC's goal is
    to ensure adequate and continued support for the health professions and
    nursing education programs. The members of HPNEC are united in their
    belief that these programs, which are essential to the development and
    training of health professionals, also are critical to our nation's
    efforts to provide health services to underserved and minority
    communities.
         The members of HPNEC thank the Chairman and the members of the
    Subcommittee for recognizing the importance of health professions and
    nursing education programs and for restoring funding for these programs
    in fiscal year 1997 to their fiscal year 1995 pre-rescission levels.
        The members of HPNEC are extremely concerned that if the
    Administration's fiscal year 1998 budget for the Titles VII and VIII
    programs is enacted, this nation will not have sufficient numbers of
    health professionals and nurses to meet future public health and
    primary care needs. In particular, the Administration proposes the
    virtual elimination of critically important programs in primary care
    and nursing education and a more than 50 percent reduction in funding
    for programs that provide community-based training of public health and
    primary care providers to serve rural or inner-city medically
    underserved communities.
        The Administration cites ``the huge increases in the number of
    health professionals over the past few decades leading to an oversupply
    in some disciplines.'' However, the Administration fails to account for
    the continuing undersupply of primary care physicians, advanced
    practice nurses, physician assistants, dentists, and other health
    professionals in many parts of the United States. HPNEC believes that
    these drastic cuts proposed by the Administration will have
    significantly adverse health consequences for underserved populations.
        Since 1986, the number of federally designated primary care health
    professional shortage areas has increased from 1,949 to 2,492, but the
    number of primary care physicians needed to eliminate these shortages
    has not kept up--despite an increase in the overall number of
    physicians. The Council on Graduate Medical Education's (COGME) Fourth
    Report--entitled ``Recommendations to Improve Access to Health Care
    Through Physician Workforce Reform''--noted continued shortages in the
    field of preventive medicine and recommended increasing the percentage
    of physicians trained and certified in preventive medicine as a
    national goal.
        Moreover, these programs are necessary for an increasingly complex
    health care system that must care for a population that includes
    growing numbers of serious pediatric conditions as well as serve an
    aging population with more chronic illness and major demographic
    changes. The Administration's cuts would cripple the federal mission to
    increase the number and to target the distribution of much needed
    health professionals and nurses.
        As our nation's health care system undergoes rapid change, with an
    increasing emphasis on managed health care, an appropriate supply and
    distribution of health professionals has never been more essential to
    the public health. In 1995, the Pew Health Professions Commission
    reported that managed care will increase the need for public health
    professionals. COGME's Seventh Report to Congress states the need for
    more generalist physicians trained in community-based, managed care
    settings due to the rapid growth and interest in managed health care.
    The report recommends providing incentives for generalist training
    including residencies in family practice, general internal medicine,
    general pediatrics, medicine-pediatrics, and preventive medicine
    training, and increased training in non-hospital settings. Titles VII
    and VIII health professions education programs continue to assist
    health professions institutions in responding to the changing demands
    of the health care marketplace and in ensuring that all Americans have
    access to appropriate and timely health services.
        The members of HPNEC urge the Congress to reject the
    Administration's efforts to reduce the funding for these programs.
    Instead, we recommend that the Subcommittee provide a combined
    appropriation of $302 million for Titles VII and VIII in fiscal year
    1998. This recommendation represents a 3 percent inflationary increase
    over the amount appropriated for these programs in fiscal year 1997.
    While acknowledging that the Congress has placed a high priority on
    balancing the federal budget, HPNEC emphasizes that a $302 million
    appropriation is necessary to maintain current efforts to address our
    nation's rapidly changing health care system.
        Many of the Title VII and VIII programs underwent major changes as
    a result of the Health Professions Education Extension Amendments of
    1992, Public Law 102-408. These amendments provided new and expanded
    areas of emphasis, including minority representation, allied health,
    rural areas, and HIV/AIDS, along with a continued strong focus on
    primary care, nursing, and network programs. These programs have been
    restructured to respond to the following national health professions
    goals: increase the number of underrepresented minorities graduating;
    increase the proportion of graduates selecting generalist careers; and
    increase the number of graduates practicing in underserved areas.
        As a result of the reauthorization, the Title VII and VIII programs
    promote several important themes, including generalism and primary care
    in education and training, linkages between service and education,
    community-based education, multidisciplinary education, and workforce
    diversity.
        In closing, Titles VII and VIII of the Public Health Service Act
    meet the nation's need for an expanded supply of primary health care
    providers and public health professionals. For both institutions and
    students, the educational process is not a faucet that can be turned on
    and off without serious consequences. It is a carefully planned and
    carried out undertaking that depends upon stability of financial
    support. Federal funds are a vital part of this effort because they
    focus on innovative approaches to changes in the health care delivery
    system and help to prepare those who deliver basic care to underserved
    people. Drastic cuts in health professions education needlessly put at
    risk the public's future health. The solution is to protect Titles VII
    and VIII from the proposed reductions and to fund in accordance with
    the need. In this rapidly changing health care environment, it is
    crucial Title VII and Title VIII programs receive an appropriation of
    at least $302 million for fiscal year 1998 to meet their missions.
        The members of HPNEC appreciate the opportunity to comment on these
    vital programs and look forward to working with the Subcommittee in
    support of them.
        List of HPNEC Members Endorsing This Statement: Ambulatory
    Pediatric Association; American Academy of Pediatrics; American Academy
    of Physicians Assistants; American Association of Colleges of Nursing;
    American Association of Colleges of Osteopathic Medicine; American
    Association of Colleges of Pharmacy; American Association of Dental
    Schools; American Association of Nurse Anesthetists; American College
    of Preventive Medicine; American Dental Association; American
    Geriatrics Society; American Pediatric Society; American Psychiatric
    Nurses Association; American Psychological Association; American
    Society for Clinical Laboratory Science; Association of American
    Medical Colleges; Association of American Veterinary Medical Colleges;
    Association of Medical School Pediatric Department Chairmen;
    Association of Minority Health Professions Schools; Association of
    Professors of Medicine; Association of Schools of Allied Health
    Professions; Association of Schools of Public Health; Association of
    Teachers of Preventive Medicine; Clerkship Directors in Internal
    Medicine; National Association of County and City Health Officials;
    National Association of Geriatric Education Centers; National
    Association of Social Workers; National Organization of AHEC Program
    Directors; National Rural Health Association; Society of General
    Internal Medicine; and Society for Pediatric Research.
                                     ______

      Prepared Statement of the Ad Hoc Group for Medical Research Funding
        The Ad Hoc Group for Medical Research Funding appreciates this
    opportunity to submit written testimony to the Senate Labor, HHS and
    Education Appropriations Subcommittee.\1\
    ---------------------------------------------------------------------------
        \1\ The Ad Hoc Group for Medical Research Funding receives no
    Federal funding.
    ---------------------------------------------------------------------------
        The Ad Hoc Group for Medical Research Funding is a diverse
    coalition of nearly 200 organizations representing patient and
    voluntary health groups, medical and scientific societies, academic and
    research organizations and industry. The Ad Hoc Group advocates for an
    increased federal investment in medical research through the National
    Institutes of Health (NIH) to build upon past scientific achievements,
    address present medical needs and anticipate future health challenges.
        The patients, scientists, and research institutions represented by
    the Ad Hoc Group acknowledge the difficult choices this subcommittee
    has made in the past few years that have enabled the extraordinary
    funding increases for the NIH. We thank the subcommittee for making the
    NIH one of its very highest priorities. We have confidence that the
    subcommittee will continue to ensure that the NIH budget is sufficient
    to sustain the brisk pace of research and discovery this nation has
    come to expect from the biomedical and behavioral sciences. We are
    especially grateful to the Chairman for his recent statements
    expressing his commitment to advancing this nation's biomedical
    research efforts through the NIH.
        To ensure that NIH funding levels are consistent with currently
    available research opportunities, the Ad Hoc Group relies on the
    professional judgement of scientific leaders, including the NIH
    leadership. For fiscal year 1998 the Ad Hoc Group supports the nine
    percent increase identified by Dr. Varmus in his professional judgement
    budget. The Ad Hoc Group believes that this judgement is the best and
    most reliable estimate of the minimum level of funding necessary to
    sustain the high level of scientific excellence attained by the NIH.
        A nine percent increase will boost the number of competing research
    grants to over 8,000. This would allow the NIH to exploit the
    opportunities now present in medical science, as well as increase the
    size of these grants to keep pace with inflation. Moreover, a nine
    percent increase will allow the expansion of the research centers
    program, the focus of clinical science, along with research training
    and the intramural program.
        NIH research manifests itself in the everyday lives of Americans as
    patients, consumers and employees. The benefits of biomedical and
    behavioral research are realized on several levels--improved diagnosis,
    treatment and prevention of disease and disability; enhanced the
    quality of life through increases in functional capacity and reductions
    in pain and suffering; and contributions to a stronger economy through
    decreased health care costs, increased productivity and the development
    of a thriving biotechnology industry.
        As patients, the millions of Americans afflicted with acute or
    chronic diseases and disabilities and the families and other loved ones
    who care for them know all too well the painful health challenges that
    face us. They must endure the physical and emotional distress and the
    economic costs associated with disease and disability. While an array
    of diseases, like cancer, asthma and heart disease, have caused an
    untold amount of human suffering over time, threats from new and
    emerging infectious diseases demonstrate our continuing vulnerability
    to the forces of nature. NIH plays a central role in mitigating the
    effects of both new and old diseases.
        Since the late 1960s there has been a sharp decline in heart
    disease mortality for both men and women, blacks and whites alike. A
    decreased fatality rate, measured as the proportion of patients who die
    shortly after suffering a heart attack, appears to be responsible for
    the reduction in overall heart disease mortality. While medical
    research has been successful in the effort to save the lives of heart
    attack victims, a cure for heart disease still eludes researchers.
    Consequently, an increasing number of individuals living with heart
    disease are susceptible to heart failure--the inability to pump blood
    through the heart. The heart failure rate has tripled over the past 30
    years, causing 45,000 deaths annually.
        A National Heart, Lung and Blood Institute-sponsored clinical trial
    showed that the use of an angiotensin converting enzyme (ACE) improved
    the survival rate among heart failure patients and may retard the loss
    of heart pumping capacity. The study indicates that the ACE inhibitor
    reduced deaths and hospitalizations of heart failure victims by 16
    percent and 26 percent, respectively. Routine use of an ACE inhibitor
    to treat heart failure could prevent 10,000 to 20,000 deaths and
    100,000 hospitalizations annually.
        Another NIH clinical trial demonstrated the value of tissue
    plasminogen activator (t-PA), a clot-busting drug, as a useful
    treatment for ischemic stroke, which is caused by a blockage in a major
    artery leading to the brain. This finding is particularly noteworthy
    because previously physicians could only offer stroke patients a
    diagnosis and a prognosis of permanent disability. When given within
    three hours of the initial stroke symptoms, t-PA can dislodge the clot,
    thereby restoring blood circulation to the brain. t-PA increases the
    chances for complete recovery for stroke victims by at least 30
    percent. Further, upwards of 40,000 patients may experience functional
    recovery from stroke following the use of t-PA.
        Clearly, NIH basic and clinical research facilitates the
    development of many new treatment modalities allowing patients to
    survive serious health conditions. But the highest form of success
    against disease and disability is attained through the prevention of
    disease. Fortunately, NIH-funded researchers have prevailed in the
    development of new vaccines and screening techniques that allow
    individuals to live healthy lives uninterrupted by certain diseases.
    The development of new tools to prevent the onset of disease also poses
    important implications for health care costs. As consumers, Americans
    observe the reduced health care expenditures for certain diseases that
    once exacted a significant toll on human life and health spending, but
    now may be eliminated or dramatically reduced.
        Prevention activities achieve the highest yield in younger
    Americans, especially children. Consequently, the National Institute of
    Child Health and Human Development (NICHD) places high priority on
    pioneering the development of conjugate vaccines to prevent infections
    in children. One of NICHD's major successes in this effort was the
    development of the vaccine against the H. Influenzae type b (Hib)
    bacterium. Prior to the introduction of the Hib vaccine, Hib meningitis
    was the leading cause of mental retardation in the U.S. The routine use
    of the Hib vaccine in children is credited with eliminating 10,000 to
    15,000 cases of Hib meningitis each year. The estimated cost savings
    associated with the Hib vaccine is $400 million each year in health
    care dollars that would have been spent for treatment and
    rehabilitation of children with this type of meningitis.
        Researchers at the National Institute of Allergy and Infectious
    Diseases (NIAID) recently designed a screening device to permit early
    detection of chlamydial infections, the most common bacterial sexually
    transmitted disease in the U.S. Untreated chlamydial infections
    frequently lead to pelvic inflammatory disease (PID), which causes
    long-term complications such as infertility and tubal pregnancy. As
    many as 70 percent of women with chlamydial infections have no symptoms
    and do not seek treatment. Studies show that the pervasive use of this
    new screening device for detection and treatment of asymptomatic
    chlamydial infections may lead to a 60 percent lower incidence of PID
    in women. This finding has important cost implications since the cost
    of treating PID and its complications exceeds $7 billion annually.
        In addition to causing pain and suffering and driving up health
    care costs, disease and disability places a burden on an individual's
    ability to perform in the workplace and live independently. Premature
    death and disability remove productive individuals from the workforce,
    resulting in significant productivity losses. Fortunately, the NIH
    sponsors research in medical rehabilitation of individuals suffering
    from disease and disability with the intent to enable them to return to
    work and live independently. As employees, Americans realize the need
    to utilize the energy and talents of all members of society to compete
    effectively in the global economy.
        Alcoholism poses a significant impact on society affecting the
    approximately 14 million alcoholics, alcohol abusers and their
    families. In terms of economic and health care costs, alcoholism and
    alcohol abuse is estimated to cost society nearly $99 billion annually,
    in addition to the social and human devastation caused by the illness.
    Over 70 percent of this $99 billion is related to losses in
    productivity, excess illness and early death as a direct consequence of
    alcohol misuse.
        With the hopes of designing new drugs to treat alcohol abuse and
    alcoholism, the National Institute on Alcohol Abuse and Alcoholism
    (NIAAA) sponsors basic research to inform our understanding of the
    biological bases for alcoholism and the craving phenomenon. Such
    research led to the discovery of naltrexone, the first medication
    approved for alcoholism in 40 years. In combination with counseling,
    naltrexone lengthens the periods of sobriety and reduces the number of
    ``slips'' that become full relapses into alcohol abuse. Clearly, this
    drug holds the promise of returning many alcoholics and alcohol abusers
    to healthy and productive life styles at home and in the work place.
        Not only does NIH research make Americans more productive employees
    through reductions in disability and disease, the NIH also bolsters the
    biomedical research industry. NIH research fuels the overall economy
    vis a vis employment in the budding biotechnology industry. Many
    Americans sustain their livelihood in industries directly or indirectly
    related to medical research. NIH supported research propagated the
    development of the biotechnology industry, which increased sales last
    year by 16 percent to $10.8 billion and supported 118,000 high tech
    jobs in the national economy. Furthermore, NIH basic research leverages
    the pharmaceutical and agricultural research efforts.
        The member organizations of the Ad Hoc Group for Medical Research
    Funding vigorously urge you to appropriate a nine percent increase for
    the NIH for fiscal year 1998 to allow it to continue its research
    efforts that permit Americans to overcome serious illness, prevent the
    onset of disease and prepare individuals suffering from disabilities to
    return to work and live independently. However, the struggle against
    disease is never-ending. Many Americans face life-threatening health
    problems and new medical challenges constantly arise. For most of these
    conditions, research offers the best, and in many cases, the only hope.
    Our national investment in the NIH over the past 40 years has produced
    a wealth of opportunities in basic and clinical science that will
    ultimately alleviate and eliminate many of these conditions. This year
    as you make the difficult resource allocations, we encourage you to
    keep in mind the Ad Hoc Group maxim that medical research ``saves
    lives, saves dollars and stops human suffering.''
                                     ______

         Prepared Statement of Amy S. Langer, Executive Director, NABCO
        Good morning, Mr. Chairman, and distinguished members. As a 12-year
    breast cancer survivor leading a national breast cancer organization,
    it is my privilege to appear before you with these expert colleagues,
    and to introduce Toni Shaheen, a fellow breast cancer survivor who is
    here to speak from the heart. Usually my role is limited to breast
    cancer issues, but today those issues form one part of a larger problem
    that you have tools to repair.
        The many mysteries yet to be unraveled about how cancer works and
    how it chooses its enemies are exemplified by breast cancer, a single
    disease among hundreds of cancers, but the most common form of cancer
    in women in this country. Because of America's familiarity with--and
    fear of--this disease, when women become breast cancer patients, they
    are astonished that many vast questions remain unanswered. Among them:
      --How soon will we know how to prevent breast cancer? So far,
            prevention research is still in progress, stalled,
            undernourished or the source of conflicting information;
      --When will we have true early detection? We cannot yet diagnose
            breast cancer cells gone wrong until they cluster in billions,
            forming masses big enough to image, but also to spread and
            kill;
      --When can we design the right treatment for each patient? As good as
            many breast cancer treatments are, we still cannot predict
            which patients should receive what treatments, or how much of
            them, so that thousands of women are routinely over treated
            with drugs they do not need and others live unprotected, their
            cancers ready to reassume control; and,
      --Can we ever promise a certain cure? Although an increasing portion
            of breast cancer survivors remain cancer free, physicians
            cannot honestly reassure us that we can take a deep breath,
            have our families, make our plans, smell the roses--without the
            constant counterpoint of cancer that could return.
        We need a shift in national values, a reaffirmation and an
    unwavering commitment to bring resources to the fight against cancer.
    We need increased funding for basic and clinical research, and a plan
    to prioritize translational activities that will have immediate impact
    on prevention and treatment. We need a scientific environment that
    attracts the best minds and nurtures their explorations. We need
    science to be responsive to priorities of cancer patients and
    survivors--their needs, perceptions, hopes and fears.
        Ms. Shaheen captures this paradox--a strong and admirable woman who
    is cancer-free because of advances in treatment, but not worry-free,
    because research has not advanced enough. It is my honor to introduce
    Toni Shaheen.
                                     ______

         Prepared Statement of the Humane Society of the United States
                                  introduction
        The Humane Society of the United States (HSUS) is the nation's
    largest animal protection organization, with over 4.7 million members
    and constituents. We submit this testimony on behalf of The HSUS, as
    well as the American Humane Association, the Doris Day Animal League,
    the American Humane Association, the Massachusetts Society for the
    Prevention of Cruelty to Animals, and the Industrial In Vitro
    Toxicology Group. The latter is an organization of industrial
    toxicologists who work with in vitro (i.e., non-animal) methods. We
    appreciate this opportunity to submit testimony on the fiscal year 1998
    appropriation for the National Institute of Environmental Health
    Sciences, or NIEHS, which is one of the components of the National
    Institutes of Health (NIH).
        The organizations we represent are part of a unusual coalition that
    includes animal protection societies, consumer product companies, and a
    university. Our goal is to improve the welfare of animals used in the
    field of product safety testing. We seek to achieve this goal by
    encouraging the federal government to help industry modernize its
    testing methods. What unites the coalition is our conviction that we
    can both improve consumer safety and reduce our reliance on animals in
    safety assessment, through the application of good science.
        In this regard, we applaud the federal government for establishing
    the Interagency Coordinating Committee for the Validation of
    Alternative Methods, or ICCVAM, a multi-agency effort spearheaded by
    the NIEHS. We are testifying to urge this committee to support the work
    of the NIEHS/ICCVAM.
                                   background
        Numerous federal agencies regulate the product safety testing
    practices of industry. Historically, these agencies have played a
    relatively minor role in helping industry move away from its reliance
    on traditional animal tests. They have provided little or conflicting
    guidance to industry on how to gain regulatory approval of new methods.
    In particular, companies sought guidance on how to conduct evaluations
    of new test methods, an expensive and complex process known as
    ``validation.''
        Industry's attempts to move away from traditional animal tests
    reflect its desire to respond to public concerns about animal welfare
    and to take advantage of the latest technology applicable to safety
    testing. Understandably, companies are hesitant to pursue
    ``alternative'' test methods without the involvement and imprimatur of
    the regulatory agencies. It became imperative, therefore, that the
    federal government assume a more active and high profile role in
    alternative test development.
        The NIEHS seemed to be the most suitable agency to coordinate the
    government's expanded participation in the development of new and more
    humane test methods. It has the requisite technical expertise and the
    experience of running the National Toxicology Program, an interagency
    program charged with developing new test methods.
        In 1993, our coalition worked with the Congress to expand the
    NIEHS's mandate to include coordinating the government's work on
    alternative methods. In legislation reauthorizing the NIH (the 1993 NIH
    Revitalization Act), Congress directed the NIEHS to: develop and
    validate assays and protocols, including alternative methods that can
    reduce or eliminate the use of animals in acute or chronic safety
    testing; and, establish criteria for the validation and regulatory
    acceptance of alternative testing and to recommend a process through
    which scientifically validated alternative methods can be accepted for
    regulatory use (Title XIII, Sec.  1301).
        As the term is used in this legislation and in the field of
    laboratory animal welfare, ``alternatives'' fall into three categories,
    collectively known as the Three Rs. They are methods that completely
    replace the use of animals in specific tests. When replacement is not
    feasible, alternatives may be developed that reduce animal use in a
    test or refine the test to minimize animal suffering. Examples of each
    of the Three Rs are numerous. The chemical-based kits of modern
    pregnancy testing have replaced the use of animals. The routine use of
    six or more rabbits in the Draize Eye-Irritancy Test has been reduced
    to three, without any meaningful loss in information, thanks in part to
    a statistical analysis conducted by the Food and Drug Administration.
    The LD50 Test, in which animals are dosed to determine the
    concentration that kills half of them, has been refined in several
    ways, including euthanizing moribund animals.
        Although alternative methods are defined with reference to animal
    welfare, the Three Rs approach to safety testing is embraced by
    industry and regulatory agencies, given its potential to provide
    methods that are quicker, less expensive, and more informative than
    traditional procedures.\1\
    ---------------------------------------------------------------------------
        \1\ NIEHS Interagency Center for the Evaluation of Alternative
    Toxicological Methods, NIEHS draft proposal dated March 6, 1997.
    ---------------------------------------------------------------------------
        We commend the NIEHS for its ongoing work in implementing the
    alternatives provisions in the NIH Revitalization Act. The NIEHS
    initiated a modest but important funding program ($1.5 million) to
    support studies of alternative methods. These studies, now in the
    second year of a three-year program, base the development of new
    methods on an understanding of the actual mechanisms of toxicity.
        In 1994, in a more far-reaching initiative, the NIEHS established
    the ad hoc Interagency Coordinating Committee for the Validation of
    Alternative Methods, known as ICCVAM, which includes representatives
    from all relevant federal regulatory agencies.\2\ In October, 1995,
    ICCVAM issued a draft guidance document on ``Validation and Regulatory
    Acceptance of Toxicological Test Methods.'' Two months later, ICCVAM
    held a workshop to solicit comments on its draft report from all
    interested parties, including wide representation from industry,
    academia, and public interest groups, as well as from officials of
    ICCVAM's European counterpart, the European Center for the Validation
    of Alternative Methods (ECVAM).\3\ ICCVAM integrated these comments
    into its final report, which it issued earlier this year.\4\
    ---------------------------------------------------------------------------
        \2\ These include the Consumer Product Safety Commission, the
    Environmental Protection Agency, the Departments of Agriculture,
    Defense, Energy, Interior, Labor, and Transportation, as well as the
    Department of Health and Human Services (through the Food and Drug
    Administration, the Agency for Toxic Substances and Disease Registry,
    the National Institute for Occuational Safety and Health, and parts of
    the National Institutes of Health).
        \3\ Final Report: NTP Workshop on Validation and Regulatory
    Acceptance of Alternative Toxicological Test Methods, December 11-12,
    1995, Arlington, VA. NTP, Research Triangle Park, NC, 1996.
        \4\ Validation and Regulatory Acceptance of Toxicological Test
    Methods, A Report of the ad hoc Interagency Coordinating Committee on
    the Validation of Alternative Methods. NIEHS, Research Triangle Park,
    NC, 1997 (NIH Publ. Number 97-3081).
    ---------------------------------------------------------------------------
        The publication of this report is a landmark event in the process
    of modernizing toxicological methods and decreasing reliance on
    traditional animal tests. The report provides the federal government's
    collective advice on how to validate new test methods and it encourages
    industry to involve appropriate government representatives in
    validation programs from the earliest stages.
        The report also outlines the process that the government will use
    in assessing the regulatory acceptability of proposed new methods, as
    well as the principles that will govern that assessment. ICCVAM will
    coordinate the review of proposed methods with other federal agencies
    that may find the method useful. It will focus on testing issues that
    are common to multiple agencies without impinging on considerations
    unique to individual programs and agencies. It will forward
    recommendations regarding the scientific validity and potential
    acceptability of test methods to agencies for consideration. Each
    federal agency will then determine the regulatory acceptability of the
    method, according to its regulatory mandates.
                               current situation
        The NIEHS is moving swiftly to translate the ICCVAM report into
    action. It is changing ICCVAM's status from an ad hoc committee to a
    standing body. Moreover, the NIEHS plans to establish a Center for the
    Evaluation of Alternative Toxicological Methods with a small staff to
    handle the day-to-day work of ICCVAM, such as organizing workshops and
    peer reviews of proposed new methods (the members of ICCVAM itself are
    agency representatives with full-time responsibilities at their home
    agencies).
        Since its inception in 1994, ICCVAM has become a major player in
    promoting the development, validation, and regulatory acceptance of
    alternative methods in the United States. ICCVAM has also been active
    internationally, not only on these issues but on the critical trade
    issue of harmonizing testing requirements across countries. It has
    garnered widespread support from private industry and the animal
    protection community, and news of its activities has appeared in
    prestigious scientific journals such as Science.\5\
    ---------------------------------------------------------------------------
        \5\ ``Panel Backs Animal Testing Alternatives,'' Science, 12 Jan.
    1996, p. 135.
    ---------------------------------------------------------------------------
        Thanks to Congress' foresight in passing the NIH Revitalization
    Act, and to the NIEHS's leadership in implementing it, the formation of
    ICCVAM is allowing the various federal agencies involved in safety
    assessment to speak with one voice when addressing industry's efforts
    to substitute new alternative methods for current animal tests.
                                   conclusion
        We recognize that the NIEHS's 1998 budget request of $319 million
    reflects the agency's budgetary constraints and competing priorities.
    However, the NIEHS's monetary investment in advancing alternative
    methods, though too small to constitute a line item in the agency
    budget, will nonetheless have a considerable impact in facilitating the
    private sector's adoption of more sophisticated and humane methods of
    safety testing. Moreover, federal agencies themselves will incorporate
    the newer methods into their own safety assessment programs. The
    NIEHS's modest investment in new technology now will be quickly
    recouped given the cost-efficiency of alternative methods.
        We therefore request that this committee express its support of the
    NIEHS's important work in advancing new, alternative methods of safety
    testing, in its report language on the 1998 Labor HHS appropriation.
                                     ______

      Prepared Statement of the Consortium of Social Science Associations
        The Consortium of Social Science Associations (COSSA) appreciates
    this opportunity to comment on the fiscal year 1998 appropriations for
    the National Institutes of Health (NIH) and the Centers for Disease
    Control and Prevention (CDC). COSSA represents nearly 100 professional
    associations, scientific societies, universities and research
    institutes concerned with the promotion of and funding for research in
    the social and behavioral sciences. A list of COSSA's Members,
    Affiliates, and Contributors is attached.
        First, Mr. Chairman, COSSA would like to thank you and the
    subcommittee for your efforts on behalf of the NIH and the CDC during
    last year's budget proceedings. We recognize the difficult decisions
    which you and the members of the subcommittee were confronted. COSSA
    would also like to thank the Subcommittee for its sustained support of
    behavioral research at NIH, especially that which falls under the
    rubric of ``health and behavior'' research. Your recognition that our
    nation's health problems have multiple determinants--social, behavioral
    and biomedical--is essential for ensuring efficient, effective
    solutions to the complex health challenges we face now and in the
    future. A sustained investment in the NIH and the CDC is critical to
    the health of America.
                       the national institutes of health
        For more than a decade, COSSA has strongly advocated for increased
    social and behavioral research at the NIH. Critical health issues
    including adolescent pregnancy, infant mortality, substance abuse,
    cardiovascular disease, cancer and AIDS have significant behavioral and
    social factors that must be addressed in order to prevent and treat
    them.
        It is well known that individual behavior is important to health,
    however, it must not be the only focus of our efforts to solve these
    complex problems. Social and economic factors that contribute to the
    quality of life among the ill, or affect their adherence to treatment
    regimens, are equally important aspects of the health experience. These
    factors include racial/ethnic status, gender, age, income, education,
    community, cultural orientation, and religion. It is COSSA's position
    that federal disease prevention and health promotion activities cannot
    be effective without recognizing the role of these social and economic
    factors.
    For fiscal year 1998 COSSA supports a 9 percent increase in funding for
            the National Institutes of Health, the level of funding needed
            to maintain the high standard of scientific achievement
            represented by the NIH
        While the potential that social and behavioral research possesses
    has not been fully recognized by the NIH, there are institutes that
    support significant programs in social and behavioral research: the
    National Institute on Aging (NIA), the National Institute on Child
    Health and Human Development (NICHD), the National Institute of Nursing
    Research (NINR), the National Institute of Mental Health (NIMH), the
    National Institute of Alcohol Abuse and Alcoholism (NIAAA), and the
    National Institute on Drug Abuse (NIDA).
        The Office of Behavioral and Social Sciences Research.--The
    bipartisan creation of the Office of Behavioral and Social Sciences
    Research (OBSSR) is a recognition by the Congress of the substantial
    influence of behavior and social factors on health. COSSA is extremely
    pleased with the progress that has been made by the OBSSR and its
    director, Dr. Norman Anderson. Despite having only been in operation
    since July 1995, the OBSSR has many activities underway, and have
    completed several others, including a working definition of behavioral
    and social sciences research and a strategic plan.
        National Institute on Aging.--Because it is currently estimated
    that the number of Americans age 65 and over is expected to doubled by
    2030 to nearly 68 million, it becomes increasingly vital to the health
    of our entire society that we age well. As the baby boom generation
    ages, the demands on our human and fiscal resources will increase
    exponentially.
        NIA is examining ways to stimulate additional research that looks
    at the social and behavioral factors in initiating and maintaining
    healthy behaviors. It is well documented that many of the problems that
    accompany aging are the result of behaviors that place individuals at a
    greater risk for negative outcomes such as poor health and depression.
    It is imperative that as Americans age there are approaches to prevent
    and delay disease and disability. Recent research supported by the NIA
    has shown the benefits of adopting healthy lifestyle practices:
    physical activity and nutrition, as well as discontinuing unhealthy
    habits such as smoking. Nevertheless, regardless of the well-publicized
    benefits of these lifestyle changes, surveys report that older people
    are not motivated to change their behavior.
        NIA is also examining ways to translate social and behavioral
    findings into strategies to improve the lives of older people and their
    families. As we age, one of the most commonly reported problems by
    Americans is difficulty in remembering. NIA, in collaboration with
    NINR, has begun a multi-site cooperative field trial of a cognitive
    intervention to improve independent functioning or postpone decline in
    different groups of older persons, who vary in racial, ethnic, gender,
    socioeconomic, and cognitive characteristics.
        Finally, the work of NIA's Office of Demography in Aging and its
    Heath and Retirement Survey, a 12-year study following nearly 13,000
    individuals, is critical to analyzing the economic well-being and
    health among older households as people age, especially as we seek to
    cope with key policy questions concerning Social Security, Medicare and
    pensions. The Survey will provide the first up-to-date picture of work
    and retirement and the relations of these factors to health and midlife
    family roles in the 1990s.
        National Institute of Child Health and Human Development.--NICHD
    has long served as a strong example of an institute that looks not only
    to the physiological factors affecting health, but recognizes the
    importance of behavioral, social, environmental and genetic factors to
    health outcomes. The institute's research agenda is driven both by
    basic scientific questions and by issues of current societal concern.
    However, among the NIH institutes, NICHD historically has had one of
    the lowest funding rates, whether measured by award rate or success
    rate.
        While the quality of research being conducted at all of the
    branches of NICHD is well known and appreciated by Congress, COSSA
    would like to underscore the Demographic and Behavioral Sciences Branch
    (DBSB). Its scientists recognize the importance of multidisciplinary
    research. At DBSB scientists from a wide variety of disciplines
    including demography, sociology, economics, psychology, anthropology,
    epidemiology, biology and public health all contribute, often with
    interdisciplinary approaches, to understanding population issues.
        In fiscal year 1998 nonmarital childbearing and fatherhood will
    continue to be targeted by NICHD as high priority scientific areas. The
    institute has launched a set of research projects to improve our
    understanding of the determinants of adolescent pregnancy. Thus far,
    the research supported by DBSB has yielded important information on the
    reasons behind the increase in nonmarital childbearing. The branch is
    also at the forefront of a government-wide effort to improve our
    understanding of the contributions men make in their children's lives
    and their own development.
     As a member of the Friends of NICHD Coalition, COSSA supports the
            Friends' recommendation that NICHD receive $690 million in
            funding, a 9.3 percent increase for fiscal year 1998.
        National Institute of Nursing Research.--COSSA is very pleased to
    serve as an advocate for NINR. Although one of the youngest and
    smallest of the NIH institutes, it directs a major portion of its
    funding to research and research training in areas of health promotion
    and behavior related to disease. Like NIA and NICHD, NINR recognizes
    the importance of the relationship of social and behavioral and
    biological phenomena.
        While the other institutes carry on the vital research necessary to
    eliminate maladies, NINR helps to find ways for patients to live more
    comfortably in the meantime. NINR is addressing some of our most
    pressing health problems including: controlling pain, understanding the
    interactions among physical environments, individual lifestyles, and
    genetic makeup; how care givers and patients make health related
    decisions and; postponing the physical and psychological degeneration
    associated with Alzheimer's and other chronic diseases. The NINR's
    programs are broad in scope and include all age groups, multiple
    disease categories and participants from a large spectrum of the
    population. The Institute is a vital part of the biomedical and
    behavior research at NIH. 1National Institute of Mental Health.--NIMH
    has made tremendous progress in understanding, treating, and preventing
    mental disorders, as well as helping the American public overcome the
    stigma of mental illness. Its multidisciplinary research programs lead
    the Federal efforts to identify the causes of and the most effective
    treatment for mental illnesses, which afflict more than one in five
    Americans.
        Studying mental disorders in children and adolescents is a top
    research priority for the NIMH in fiscal year 1998. It is during
    childhood or adolescence that mental and behavioral problems may first
    appear and have life-long consequences. NIMH investigators are giving
    renewed attention to the first onset of childhood mental illness as an
    opportunity to prevent progression of these disorders.
        Additionally, NIMH's research includes developing new approaches to
    diagnosis, treatment and prevention through its research efforts,
    including research on manic-depressive illness, autism and obsessive
    compulsive disorder. The NIMH is also focusing research efforts on
    racially and ethnically defined populations to understand the cultural
    differences in the expression of symptoms, resulting in misdiagnoses
    and inappropriate treatment. COSSA commends NIMH for its support of
    behavioral science investigators at the beginning stages of their
    career through its B-START (Behavioral Science Track Award for Rapid
    Transition) program.
        National Institute of Alcohol Abuse and Alcoholism.--The abuse and
    misuse of alcohol is responsible for more economic and social damage
    than almost any other health problem. It is estimated that the costs to
    society from alcoholism and alcohol abuse exceed $100 billion annually.
    Approximately ten percent of adult Americans are affected by alcohol
    abuse and alcohol dependence. More importantly, more than 6.6 million
    children under the age of 18 live in households with at least one
    alcoholic parent, putting them at risk for physical, sexual, and/or
    emotional abuse which in term places them at risk for a range of
    emotional and behavioral problems. These problems include conduct
    disorders, anxiety and depression.
        NIAAA places a priority on research that looks at psychological
    treatment and prevention of alcoholism and alcohol-related problems.
    The institute recently completed one of the largest and most complex
    randomized clinical trials (Project MATCH) ever taken in alcoholism
    treatment. The program compared the effects of different treatment
    styles when matched to specific patient characteristics, demonstrating
    that well-designed treatments, in combination with good training of
    therapists, have an positive effect on retention rates in treatment.
    The Institute is planning a follow up study on the Project MATCH
    findings to evaluate the combination of various medication combined
    with behavioral treatments.
        National Institute on Drug Abuse.--NIDA supports a comprehensive
    research portfolio of behavioral and psychosocial research to improve
    the prevention and treatment of drug abuse, dependence and addiction.
    It is well known that use of drugs is detrimental to health, family
    life, the economy and public safety. The abuse of drugs is currently
    the fastest growing vector for the spread of HIV in the U.S. and
    injection drug users (IDU) are at high risk for exposure and
    transmittal of HIV/AIDS as well as for other drug-health related
    problems.
        From survey monitoring tools, such as the 1996 Monitoring the
    Future Survey, as well as from other research-based instruments, we
    know that drug use among the young continues at unacceptable levels.
    NIDA is to be commend for the recent release of the first science-based
    guide to preventing young people from using drugs. The guide summarizes
    knowledge produced by 20 years of NIDA-supported research and
    recommends how to apply the knowledge to successfully prevent drug use
    among America's youth.
        COSSA supports the institute's decision to emphasize three general
    areas to target in fiscal year 1998 for more specific research
    including: (1) research on therapies for adolescent drug abuse; (2)
    research that addresses drug addiction treatment and HIV risk reduction
    (3) research to determine the transportability of behavioral therapies
    to the community.
        The Office of AIDS Research.--Since first being identified more
    than 15 years ago, AIDS has become the number one killer of young
    adults in the U.S. In addition, rates of increases in AIDS cases are
    now greatest for adolescents, minorities, women, injecting drug users,
    and persons infected through heterosexual contact.
        COSSA supports a consolidated appropriation for the Office of AIDS
    Research (OAR) to coordinate behavioral and biomedical HIV/AIDS
    research at the NIH. The OAR with a consolidated budget is essential to
    achieving our ultimate goal of preventing and curing AIDS. Created to
    plan, coordinate and evaluate the NIH AIDS the OAR efforts are
    essential to minimizing inefficiency and duplication.
        COSSA commends the OAR for the completion of its comprehensive
    evaluation of the NIH AIDS research portfolio which resulted in the
    Report of the NIH AIDS Research Program Evaluation Task Force. In
    fiscal year 1998, the NIH AIDS research program plan and budget is
    based on the recommendations made in the report, including placing an
    emphasis on prevention science research (enhanced studies of risk-
    taking behavior and the development of strategies to avert infection).
    As HIV is spread primarily through risk behavior, a better
    understanding of human behavior and behavior change is necessary. Even
    if a cure for HIV/AIDS was found tomorrow, changes in behavior would be
    necessary for eradication of the disease.
                   centers for disease control and prevention
        COSSA urges you to be as generous as you can in the fiscal year
    1998 appropriation for CDC. The CDC makes significant and critical
    contributions to the health of the American public, leading to longer,
    healthier lives. CDC's public health programs effectively promote
    health and quality of life by preventing disease, disability, and
    injury.
        COSSA commends Dr. David Satcher, for his acknowledgment that as
    human behavior and demographics create new public health challenges,
    the expertise that the social and behavioral sciences have will be
    critical in keeping the American public healthy. These behavioral risk
    factors: tobacco use, poor diet, physical inactivity, sexual behavior
    and illicit drug use are, according to the CDC, ``the underlying cause
    for nearly half of all deaths in the U.S.''
        Again, Mr. Chairman and members of the Subcommittee, thank you for
    the opportunity to present COSSA's views on the invaluable and
    behavioral research being conducted at the National Institutes of
    Health and the Centers for Disease Control and Prevention. Your
    continued support for these programs is vital to the U.S. and
    maintaining America's status as the world's premier biomedical and
    behavioral research leader.
                                     ______

                   Prepared Statement of Rotary International
        The Rotary Foundation of Rotary International is grateful for this
    opportunity to submit written testimony in support of the President's
    fiscal year 1998 request for the polio eradication activities of the U.
    S. Centers for Disease Control and Prevention.
        Rotary International is a global association of 28,000 Rotary
    clubs, with a membership of 1.2 million business and professional
    leaders in 155 countries. We are the world's first service club, having
    been established in Chicago in 1905. In the United States today there
    are more than 7,400 Rotary clubs with some 400,000 members. All of our
    clubs work to promote humanitarian service, high ethical standards in
    all vocations and international understanding.
        Rotary is submitting this testimony on behalf of a broad coalition
    of child health advocates, including the American Academy of
    Pediatrics, the Task Force for Child Survival and Development, the
    March of Dimes Birth Defects Foundation and the U.S. Committee for
    UNICEF, to seek your support for the global program to eradicate polio.
        Rotary and our coalition would first like to express our sincere
    gratitude. A year ago we made the case for increased funding for the
    Polio Eradication Initiative. You responded enthusiastically,
    recommending that $47.2 million be allocated for laboratory support,
    technical expertise, and polio vaccine purchase and delivery, through
    the U.S. Centers for Disease Control and Prevention.
    Progress in the Global Program to Eradicate Polio
        We would like to use this opportunity to inform you about the
    extraordinary progress toward eradicating polio that has been achieved
    during the past twelve months:
      --Some seventy-five countries conducted National Immunization Days in
            1996, taking extra measures to protect over 450 million
            children against polio--more than one half of the world's
            children under the age of five.
      --Preliminary indications are that reported polio cases for 1996 will
            be only half that of 1995--from 7000 to approximately 3,500.
            This dramatic one-year decline is due to the tremendous success
            of National Immunization Days (NIDs) in South Asia and Africa.
      --During its second year of NIDs, India was able to immunize 113
            million children on one day in December 1996, and over 123
            million on January 18, 1997--the largest single public health
            event in history. India's tremendous success provides more
            evidence that ``Target 2000'' is a reachable goal. Pakistan and
            Bangladesh coordinated their NIDs with India's to achieve the
            maximum effect over the entire region.
      --Twenty-eight sub-Saharan African countries conducted National or
            Sub-National Immunization Days during 1996 and the first months
            of 1997, as part of the continent-wide ``Kick Polio Out of
            Africa'' campaign, reaching nearly 70 million children. Forty-
            nine African countries have agreed to undertake NIDs in 1997-
            98.
      --The third year of the ``Operation MECACAR'' immunization campaign
            is currently underway. This three-year campaign is designed to
            virtually eliminate polio from 19 contiguous countries
            stretching from the Middle East to Russia.
      --As a result of three years of successful NIDs, China reported no
            laboratory-confirmed indigenous polio cases in 1995. Reported
            polio cases in the Western Pacific are confined to the Mekong
            Delta and the region of China bordering Myanmar. The entire
            region has started on the process of certifying polio
            eradication.
    The Role of the U.S. Centers for Disease Control and Prevention
        In fiscal year 1997, Congress appropriated $47.2 million for the
    polio eradication activities of the Centers for Disease Control,
    meeting the President's request. In its report, the Appropriations
    Committee commended the CDC for its active leadership in this effort,
    and recognized the possibility of eradicating polio by the year 2000.
    As a result of these funds, in 1997 the CDC is:
      --Supporting the international assignment of 32 long-term
            epidemiologists, technical officers, virologists, and data
            managers to assist WHO and polio-endemic countries to implement
            polio eradication strategies.
      --Providing $30 million to UNICEF for polio vaccine and operational
            costs for NIDs in more than 50 countries worldwide. Many of
            these NIDs would not take place without the assurance of CDC's
            support.
      --Providing $5.5 million to WHO for surveillance and National
            Immunization Days (NIDs) operational costs, primarily in
            Africa. As successful NIDs take place, surveillance is emerging
            as a critical need, to determine where polio cases are
            continuing to occur. Good surveillance can save resources by
            eliminating the need for extensive immunization campaigns if it
            is determined that polio circulation is limited to a specific
            locale.
      --Training virologists from all over the world in advanced poliovirus
            research. The CDC's laboratories serve as an international
            reference center and training facility.
      --Helping to persuade countries such as Afghanistan and Sudan to plan
            and conduct NIDs despite ongoing civil conflict. Warring
            factions have agreed to ``days of tranquillity'' in order to
            allow immunization campaigns to occur, fully aware that polio
            and other diseases make no political distinctions.
      --Some 75 countries in Asia, Eastern Europe, the Middle East and
            Africa have already or are expected to benefit from CDC funding
            for vaccine and technical expertise for fiscal year 1997. The
            CDC sets funding priorities based on the global plan to
            eradicate polio agreed upon by all of our partners.
    Eradicating Polio Will Save the United States at Least $230 Million
            Annually
        Even though there has not been a case of endemic poliomyelitis in
    the United States since 1979, we cannot be complacent. Our children are
    not protected from polio unless the entire world is free of polio. If
    we succeed in eradicating polio by the target year 2005, no child will
    have to be immunized against polio ever again. The United States
    currently spends at least $230 million annually to immunize its
    newborns against polio, a disease no longer occurring naturally
    anywhere in the Western hemisphere. This figure is expected to rise as
    the U.S. switches from an immunization program using inexpensive oral
    polio vaccine (OPV--Sabin vaccine) to one based on the higher-priced
    inactivated polio vaccine (IPV--Salk vaccine). Globally, over 1.5
    billion US dollars are spent annually to immunize children against
    polio. This figure does not even include the cost of treatment and
    rehabilitation of polio victims, nor the immeasurable toll in human
    suffering which polio exacts from its victims and their families. Once
    polio is eradicated, tremendous resources will be unfettered to focus
    on other diseases.
        Humankind is on the brink of a historic opportunity. Poliomyelitis
    is the second major disease in history that is close to eradication.
    The case to invest in polio eradication is compelling. We celebrated
    the eradication of smallpox in 1979. No child in the United States or
    in the world will ever suffer from smallpox again. The annual global
    savings of nearly $1 billion per year in smallpox disease and control
    costs far exceeds the approximately $300 million that was spent over
    ten years to eradicate smallpox. The United States was a major force
    behind the successful eradication of the smallpox virus, and has
    recouped its entire investment in smallpox eradication every 2\1/2\
    months since 1971.
        In 1988 and again in 1993, the member nations of the World Health
    Assembly, including the United States, affirmed their commitment to
    eradicate polio by the year 2000 and to achieve certification of
    eradication by the year 2005. But even with these great intentions and
    with the tremendous reduction of polio cases being achieved in many
    countries, there is concern that other more pressing demands will
    divert attention and funding from this program. If we hesitate in our
    commitment to eradication, we will lose momentum and risk substantial
    setbacks in the fight against the polio virus, including the risk of
    re-introducing the wild polio virus into North or South America. The
    risk of virus importation remains high, particularly when routine
    immunization levels are allowed to fall below acceptable levels.
    Eradicating Polio Will Help Develop the Infrastructure Needed to Fight
            Other Diseases
        Investing in polio eradication means helping countries to develop
    the public health and disease surveillance systems necessary to
    effectively implement the WHO-recommended polio eradication strategies.
    Not only does a strong surveillance system help eradicate polio, but it
    helps to control the spread of other infectious diseases. Already, much
    of Latin America is free of measles, due in part to improvements in the
    public health infrastructure implemented during the war on polio. The
    campaign to eliminate polio from communities has also led to increased
    public awareness of the benefits of immunization, creating a ``culture
    of immunization'' and resulting in higher immunization rates for other
    vaccines.
    Resources Needed to Finish the Job of Polio Eradication
        Although most of the costs of polio eradication efforts are borne
    by the governments of polio-endemic countries themselves, the World
    Health Organization estimates that at least $140 million in special
    contributions per year, for the next four years, is needed to help
    polio-endemic countries carry out the polio eradication strategy. We
    are asking that the United States continue to take the leadership role
    in meeting this shortfall.
        The United States' commitment to polio eradication is stimulating
    other countries to increase their support as well. We are not
    requesting an increase in US funding for polio eradication this year
    because we strongly believe that as the developed nations of the world
    will gain the greatest financial benefits of polio eradication, so must
    they share its costs. The U.S. commitment to meet over fifty percent of
    the global shortfall is sending a strong message that America cares
    about the health of the world's children, and is challenging other
    countries to follow its lead. Belgium, Canada, Finland, France, Italy,
    Norway, Sweden and Switzerland are among those countries which have
    followed America's lead and have recently announced grants for polio
    eradication campaigns in Africa, Eastern Europe, and South Asia. Japan
    and Australia have been and will continue to be major donors in
    Southeast Asia and the Western Pacific. And both Denmark and the United
    Kingdom have recently made major grants that will virtually guarantee
    that India eradicates polio by the target year 2000.
        Rotary International has been working for more than a decade to
    help eradicate polio from the world, and the end is in sight. This has
    been one of the largest private/public sector initiatives ever
    organized. By the time polio has been eradicated, Rotary International
    will have expended nearly $400 million on the effort, making it the
    largest private contribution to a public health initiative ever. Of
    this, $277 million has already been allocated for polio vaccine,
    operational costs, laboratory surveillance, cold chain, training and
    social mobilization in 118 countries. More importantly, we have
    mobilized tens of thousands of Rotarians to work together with their
    national ministries of health, UNICEF and the World Health
    Organization, and with health providers at the grassroots level in
    thousands of communities. Together with our partners, we have achieved
    some remarkable successes. The reported number of cases worldwide has
    decreased from over 38,000 cases in 1985 to an estimated 3,500 cases
    for 1996--a decline of over ninety percent! The attached chart depicts
    this dramatic progress.
    Fiscal Year 1998 Budget Request
        For fiscal year 1998, we are again requesting that at least $47.2
    million be channeled through the U.S. Centers for Disease Control and
    Prevention for targeted polio eradication efforts--primarily polio
    vaccine purchase and delivery, as well as technical support for
    National Immunization Days. This would maintain funding at the fiscal
    year 1997 level, and ensure that the USA remains the decisive factor in
    the success of the global initiative. This $47.2 million for fiscal
    year 1998 is essential to reaching the goal of global polio eradication
    by the year 2000.
        Polio eradication is an investment, but few investments are as
    risk-free or can guarantee such an immense return. The world will begin
    to ``break even'' on its investment in polio eradication only two years
    after the virus has been vanquished. And the financial and humanitarian
    benefits of polio eradication will accrue forever. This will be our
    gift to the children of the twenty-first century.
        Thank you for this opportunity to submit testimony.

    Report global incidence of poliomyelitis, 1981-96

                                                              Reported cases
                                                                of polio \1\

    1981..........................................................    66,052
    1982..........................................................    51,900
    1983..........................................................    40,219
    1984..........................................................    35,345
    1985..........................................................    38,637
    1986..........................................................    33,038
    1987..........................................................    39,866
    1988..........................................................    35,251
    1989..........................................................    26,207
    1990..........................................................    23,484
    1991..........................................................    13,484
    1992..........................................................    14,777
    1993..........................................................    10,503
    1994..........................................................     8,635
    1995..........................................................     7,028
    1996 Estimated................................................     3,500

    \1\ Number of polio cases reflects only those cases reported to the
    surveillance network.

    Source: World Health Organization Actual polio cases occuring may be as
    many as ten times greater.
    ---------------------------------------------------------------------------
                                     ______

     Prepared Statement of Sharon Terry, President, PXE International, Inc.
        Mr. Chairman, and members of the subcommittee: My name is Sharon
    Terry, and I am the President of PXE International Inc. We wish to
    express our sincere thanks to you for this opportunity to submit a
    written testimony regarding the budget of the National Institutes of
    Health (NIH).
        I would like to thank Chairman Specter and members of the
    Subcommittee for your continued and unflagging support of biomedical
    research and the NIH.
        Pseudoxanthoma elasticum (PXE) is an inherited connective tissue
    disorder. It causes calcification of connective tissue including: skin,
    eyes, cardiovascular and gastrointestinal systems. Most of the time it
    causes legal blindness, and many times it causes heart disease and
    gastrointestinal bleeding. PXE is estimated to affect about 1 in 50,000
    Americans, but recent studies suggest that it may be more prevalent.
        People affected with PXE experience blindness associated with
    retinal bleeding. Thus, at a time when they are most productive, in
    their 40s and 50s, they are unable to continue to work, they cannot
    drive, or read and the life they once knew is changed. Early heart
    attack and gastrointestinal bleeding can be life threatening and
    debilitating. Clearly we need to advance research for PXE, so little is
    known that there is at present no treatment.
        My two children have PXE. They are very young and thus time is on
    their side if basic biomedical research can continue to be funded
    adequately. As parents we hope and pray. As the founders and chief
    officers of PXE International we care deeply for the many people who
    have come to us for help, and we work hard for their interests.
        At the present time, grants funded by the NIH have led to some
    exciting discoveries for PXE. These breakthroughs continue to help us
    move closer to cures for PXE. An international symposium in Bethesda,
    in late 1997, is partially supported by the NIH. In addition, adequate
    funding of clinical research is necessary to translate these remarkable
    findings into better treatment therapies. We feel very strongly that an
    investment in NIH research is a healthy investment in our future.
        But it is not only for PXE that we testify. PXE International is a
    member of several alliances and coalitions. Working with these other
    patient advocacy groups has helped us become aware of exciting advances
    in basic science, that will lead to cures and better treatments for all
    disease sufferers. One of the coalitions that we are members of is the
    National Institute of Arthritis and Musculoskeletal and Skin Diseases
    Coalition. This organization represents 50 other skin disorders. We
    have seen basic medical research result in advances in a better
    understanding of Alopecia Areata, Epidermolysis Bullosa, and
    Ichthyosis.
        We respectfully urge Congress to continue to invest in conquering
    these common, costly, and crippling diseases by providing $280 million
    annual appropriations for the NIH fiscal year 1998. This would be a 9
    percent increase over the current fiscal year. This increase would
    allow more allocation of funds to support more approved research
    grants. It would also provide more research training and career
    development for future investigators, conduct urgently needed new
    clinical trials, and expand the intramural research program currently
    underway.
        We represent hundreds of Americans suffering the effects of
    pseudoxanthoma elasticum, and further, we represent ordinary Americans,
    all affected by medical issues each day. We offer our thanks to the
    Committee and to Congress for its continued support of biomedical
    research. Without this support, we could not hope to provide a cure or
    to ameliorate the pain and disability caused by this disorder, or any
    other.
                                     ______

        Prepared Statement of the American Society of Clinical Oncology
        The American Society of Clinical Oncology (ASCO) represents 11,000
    oncologists who care for people with cancer and conduct clinical
    research. Our members commend Congress for recognizing the continued
    need to support biomedical research at the National Institutes of
    Health (NIH) in the face of efforts to balance the federal budget. But,
    as Mr. Specter and others have recognized, we must be relentless in
    maintaining NIH funding as a high priority.
        Research has fortunately moved us forward toward increased survival
    rates and improved quality of life for many people diagnosed with
    cancer. The pace of discovery in science is affected by many factors.
    But, clearly, a primary limitation is insufficient resources to support
    research, infrastructure, and personnel. Right now, the opportunities
    in cancer research justify at least a doubling of the budget of the NIH
    over five years. This proposal has broad bipartisan support in both the
    House and Senate. The National Cancer Institute (NCI) specifically
    should receive its fair share of this increase to ensure that
    scientists are able to take advantage of current knowledge by expanding
    our understanding of the fundamental nature of cancer and translating
    basic research into clinical practice.
        The scientific challenges we face are too numerous to detail here,
    but include some of the most promising areas of investment:
      --Translate basic research in immunology and molecular biology into
            the design of vaccines that target the prevention (e.g.,
            Papilloma type cervical cancer) or treatment (e.g., melanoma)
            of specific cancers;
      --Support research on immunologically directed therapies that use
            antibody-radioisotopes to identify tumor-specific antigens that
            bind the isotope to the tumor cell for the purpose of killing
            it;
      --Develop agents to block angiogenesis, the formation and creation of
            blood vessels that facilitate tumor cell dissemination or
            metastasis;
      --Improve our ability to induce cell differentiation, the lack of
            which characterizes cancer cells, through such agents as
            Vitamin A analogues;
      --Utilize the information from the human genome project to improve
            cancer predisposition testing and to individually tailor
            therapies, for example, through cancer suppressor genes; and,
      --Identify and test agents to interfere with the initiation and
            promotion of cancer cell growth.
        To accomplish this agenda, the country must be willing to make more
    of an investment in cancer research. Several surveys have demonstrated
    that the American people support this goal; now, we must find the
    political will to reach it.
        Increased NIH funding should be used to support a balanced research
    portfolio that includes basic, translational, and patient-oriented
    research. ASCO, as a voice for physicians and their patients, has a
    particular interest in patient-oriented research. In 1995, ASCO
    reported that NCI had invested only 1 percent of its funds in
    investigator-initiated research with clinical application. As a result
    of this astonishing finding, NCI altered its review procedures such
    that clinical applications have begun to receive more favorable
    ratings. Last year, the Senate report acknowledged the need for this
    program, which we concur should continue. Nonetheless, more permanent
    steps need to be taken.
        How should we address the underlying problem? While no one can
    answer this question with certainty, there are two areas where we
    believe NIH can improve the viability of clinical cancer research: (1)
    establishment of a study section dedicated to the review of clinical
    grants; and (2) development of a granting mechanism for mentors of
    young clinical investigators.
        The lack of an appropriate study section to review patient-oriented
    research project grants is a major barrier to the support of clinical
    cancer research. Because research involving people with or at risk for
    serious disease involves variables and outcome measures that are
    difficult to control, these proposals are at a significant disadvantage
    when directly compared in a study section with relatively
    straightforward laboratory science grants. Numerous reports from such
    groups as the National Cancer Advisory Board and the congressionally
    mandated Subcommittee on the Evaluation of the National Cancer Program
    (SENCAP) have urged adoption of a dedicated study section as a remedy
    to this problem.
        Without a balanced approach to the distribution of scarce research
    dollars, the clinical research infrastructure will not be prepared to
    rapidly translate the promising developments in basic research. The
    establishment of a clinical research study section with a primary focus
    on patient-oriented research is an important step that could have a
    tremendous impact on clinical research with minimal new outlays.
    Congress should urge NIH to take this step at the earliest possible
    time.
        In addition to improving grant review procedures, we must also
    recognize that becoming a good clinical investigator requires more than
    course-driven knowledge or even hands-on experience. A well-trained
    clinical investigator must also understand the art of clinical
    grantsmanship, appreciate academic values as they relate to scientific
    integrity and patient care, and recognize resources available for
    continued educational and scientific experiences. These refined skills,
    unfortunately, are not readily taught or learned. They develop over
    time and are best acquired from a mentor--an experienced individual who
    takes specific interest in the development of the career of a young
    trainee.
        The changing health care environment with its increased focus on
    generating clinical revenues has made this so-called ``socialization''
    process more difficult. Senior staff have less time and fewer resources
    to devote to the mentoring process, despite the fact it is well
    accepted that individuals working with mentors are more successful and
    more satisfied in their professional life. While data are limited,
    studies of women and minorities are consistent in their findings that
    these populations of trainees perform particularly well when working in
    conjunction with mentors.
        ASCO proposes the establishment of a new NIH award program for
    ``clinical research mentors.'' By establishing a new grant mechanism
    specific to mentorship, we will send our senior scientists the message
    that this is an important and rewarded activity in which they should
    participate.
        What would a mentor do with grant funds? The monies would be
    utilized primarily as direct compensation for the time and resources
    required to nurture a young trainee, and to better define what
    constitutes a successful mentorship program. Particular attention would
    be placed on teaching the young trainee how to develop an investigator-
    initiated research grant proposal that is both innovative and
    scientifically sound enough to attract the attention of study section
    reviewers.
        In closing, we can only take advantage of the opportunities to
    advance knowledge and improve cancer care by putting the necessary
    resources into our research and training budget. The national goal of
    containing costs is laudable, but inadequately funding biomedical
    research with its long-term potential to save money and lives is
    shortsighted. With the necessary resources, we can look forward to a
    day when the devastating impact of cancer is minimized. Simply
    speaking, we need much more funding, as well as an improved system to
    support clinical investigators who are in the vital position of
    translating the exciting work of basic scientists into improved bedside
    care.
                                     ______

          Prepared Statement of the American Society for Microbiology
        The American Society for Microbiology (ASM) thanks you for the
    opportunity to provide a written statement for the record in support of
    the fiscal year 1998 appropriation for the Centers for Disease Control
    and Prevention (CDC). The ASM is the largest single life science
    society in the world with a membership of over 42,000 individuals who
    are engaged in basic and applied research and diagnostics and work in
    clinical, public health, and industrial laboratories, as well as in
    academia and government. The ASM recognizes the difficult budget
    constraints the Committee on Appropriations faces in determining the
    fiscal priorities for the nation, and would like to thank you for your
    past support for the CDC, especially for infectious disease funding.
    The CDC has been recognized for its efforts to combat the continuing
    threats of new and reemerging infectious diseases, and the ASM
    recommends that Congress continue its support and adopt the
    Administration's request for new and reemerging infectious diseases.
        The Administration's request for CDC's infectious disease program
    includes an increase of $15 million for new and reemerging infectious
    diseases and $10 million for its role in foodborne disease prevention
    as outlined in the Presidential Food Safety Initiative. The ASM
    supports the Administration's request for an additional $25 million to
    combat new and reemerging infectious diseases, including foodborne
    diseases. This request represents the minimum level of resources needed
    by the CDC to improve the nation's public health capacity to combat
    infectious diseases. New and reemerging infectious diseases continue to
    proliferate and many chronic diseases and conditions have now been
    proven to have infectious origins (ulcers, cervical cancer, chronic
    liver disease. The ASM also recommends that Congress adopt the fiscal
    year 1998 budget proposal developed by the CDC Coalition. The CDC
    Coalition members, over 100 in number, are committed to improving the
    public's health through cost effective prevention and control
    strategies. For fiscal year 1998, the CDC Coalition recommends Congress
    appropriate $3 billion for the CDC.
    Infectious Diseases
        Our nation continues to be faced with new, reemerging and drug
    resistant infections. To what extent these infectious diseases are
    rising is still unknown due to the lack of a comprehensive needs
    assessment and evaluation of the nation's surveillance capabilities.
    Infectious diseases remain the world's leading cause of death,
    accounting for over half of the 50 million deaths annually. In the
    United States, the death rate from infectious diseases rose 58 percent
    between 1980 and 1992, claiming approximately 166,000 lives annually.
    At a cost of $120 billion each year, recognized infectious diseases
    account for one out of every six health care dollars and a quarter of
    all physician office visits. However, these are only estimates due to
    the lack of information and data on the actual national, state and
    local surveillance capabilities, the total infectious disease burden,
    and the economic and social costs of infectious diseases to the nation.
    There are a number of known and many still unknown reasons for
    increasing rates of infectious and multi-drug resistant diseases. Some
    examples and reasons for emergence include but are not limited to:
        Social Factors-Child Care Facilities.--Infectious diseases are the
    leading cause of pediatric visits. Children in child care facilities
    are 2-3 times more at risk of infectious diseases compared to children
    cared for at home. It is predicted that by the year 2000, 75 percent of
    mothers with children under 6 will work outside the home. Incidences of
    some child care associated infections (otitis media, giardia) have been
    rapidly increasing as well as related incidences of antimicrobial
    resistance. In spite of these trends, CDC does not have the resources
    to support routine surveillance of pediatric practices.
        Environmental Factors.--Ecological changes such as the development
    and deforestation of former woodlands, farms, and fields into housing
    developments and shopping centers have led to the emergence of new
    infectious diseases previously unknown to cause disease in humans.
    Humans, because of their recent assessability due to parts of rural
    America becoming suburban, have become the ``new'' hosts for many tick
    borne diseases. Although Lyme disease accounts for the majority of
    known tick borne diseases, the CDC has recently detected the emergence
    of a new tick borne disease, Ehrlichiosis, which can cause life
    threatening illness and sometimes death if not treated properly and
    quickly.
        Chronic Diseases and Infectious Diseases.--Many chronic diseases,
    and diseases once thought to be noninfectious, have been proven to be
    of infectious origin. The most well known example is peptic ulcer
    disease which was accepted for years by the medical community as a
    chronic condition which required constant medication. It has now been
    associated with helicobacter pylori, a bacterium found in the stomach
    and is treated much more effectively by a course of antibiotics.
        Most recently, the CDC has identified a fungus that thrives in
    waterlogged basements and may account for a percentage of infant deaths
    that had been previously attributed to sudden infant death syndrome
    (SIDS). CDC scientists have shown a link between exposure to this
    fungus, Stachybotrus atra, and to the death of six infants in the
    Cleveland area, and the hospitalization of twenty four other infants.
    This fungus had been previously known to cause severe gastrointestinal
    bleeding in livestock in Europe but had not been suggested as affecting
    human beings in this country. SIDS is listed as the cause of 6,000
    infant deaths a year and is the leading cause of death in babies 1
    month and older. CDC is now conducting a retrospective investigation of
    172 infants who were considered SIDS babies to determine the prevalence
    of this fungus.
        Hepatitis C is now considered the leading cause of chronic liver
    disease and the leading indicator for liver transplant. There are an
    estimated 8,000-10,000 number of persons who die as a result of chronic
    liver disease, and approximately 35,000 new infections occur each year.
    There are now an estimated 3.9 million chronically infected Americans.
    The consequences of Hepatitis C infection often occur years after
    infection. The medical, economic and social impacts of 3.9 million
    individuals infected with Hepatitis C are only slowly being realized.
    The numbers of Americans who will eventually get chronic liver disease
    and require treatment, including liver transplants, may overwhelm the
    health care system in the next century.
        Another example of the increasing numbers of chronic diseases which
    are now, in many cases, considered infectious in origin, is infertility
    and certain cancers which occur years after the initial onset of
    infection. The leading cause of infertility in this country is
    chlamydia infection. This is just one of the twenty-five or more
    infectious organisms (STD's) that are transmitted through sexual
    activity. In many women, chlamydia causes pelvic inflammatory disease
    which is one of the major causes of infertility in this country.
        Sexually transmitted pathogens also cause certain types of cancer.
    For example, the human papilloma virus (HPV) has been shown to cause
    nearly 80 percent of invasive cervical cancer cases. Women with HPV
    infection of the cervix are 10 times more likely to develop invasive
    cervical cancer than are women without such an infection. In addition,
    it has been demonstrated that the Hepatitis B virus causes many cases
    of liver cancer.
    Antibiotic Resistance
        New, resistant strains of bacteria continue to threaten the
    effectiveness of antibiotics. Antibiotics are the second most commonly
    prescribed category of drugs in the U.S. Children under the age of 15
    are being prescribed antibiotics 3 times more than adults. Although,
    antibiotic resistance is not yet measured on a national scale due to a
    lack of resources and the absence of a national surveillance system,
    select studies strongly indicate a rapidly growing problem with
    resistant strains of bacteria. Treatment costs are escalating, and run
    into the billions, due to ineffective therapeutic treatments, and
    longer hospital stays which are required to fight resistant organisms.
        As the CDC continues to expand its surveillance, investigational
    and research activities, it will gain knowledge of the growing toll of
    infectious diseases. However, once this knowledge is gained, the CDC
    will utilize this information to design effective prevention and
    control strategies to help prevent and eliminate the spread of
    infectious diseases.
    CDC Infectious Diseases Program
        Surveillance is the primary public health tool used to combat the
    outbreak of infectious diseases. Without adequate surveillance, disease
    outbreaks flourish without abatement, causing unnecessary illness and
    death and contributing to the spiraling health care costs in this
    country. Surveillance involves people monitoring the incidences of
    disease, figuring out how to stop the spread of infectious diseases,
    and replicating proven strategies throughout the nation's communities.
    Prevention of infectious diseases is a national responsibility due to
    transmission of microorganisms across local, state, and international
    borders. The CDC conducts infectious disease surveillance working in
    cooperation with state and local health departments and private health
    care providers.
        The Administration's request for an additional $15 million to
    continue implementation of the CDC plan to address new and reemerging
    infectious diseases is essential. The CDC emerging infectious disease
    plan is focused on four goals: strengthening the surveillance of and
    response to emerging infectious diseases; implementing an applied
    research extramural program to address important research questions
    related to emerging diseases (including research to develop new or
    improved diagnostic tests); developing and implementing prevention and
    health communication activities and strengthening the infrastructure of
    CDC and state/local health departments, including laboratories, to
    address new and reemerging diseases.
        With increased resources, the CDC will be able to expand its
    Emerging Infections Programs (EIP) from seven states to eight in fiscal
    year 1998. The EIP states are conducting ``early warning'' surveillance
    activities and investigations to monitor more accurately and respond to
    infectious disease outbreaks, illnesses and death. These surveillance
    sites are the backbone of the national surveillance system for new and
    reemerging pathogens. At these sites, applied epidemiological and
    laboratory research are conducted to help identify known microbial
    agents responsible for infectious diseases and also discover new
    pathogens which have emerged to create a new niche for microbial
    proliferation in humans.
        The proposed new funds for new and reemerging infectious diseases
    will also allow CDC to expand its Epidemiology and Laboratory Capacity
    (ELC) program which provides states with financial and technical
    support towards modernizing the public health laboratory's facilities
    and abilities to combat new and reemerging pathogens. To prevent the
    public health infrastructure and laboratories from further
    deterioration, these additional resources will provide specific states
    with upgraded information systems, enhanced laboratory technology, and
    trained staff to strengthen the capacity for public health surveillance
    and disease outbreak response. A portion of these resources will also
    be devoted to implementing health communication strategies for the
    general public to prevent the spread of new and reemerging infectious
    diseases and developing and implementing educational programs to
    improve antimicrobial drug use practices among health care providers
    and consumers.
    Foodborne Diseases
        There are more than 250 foodborne diseases which have been
    diagnosed and recognized. Many different bacteria (such as
    Campylobacter, Salmonella and Escherichia coli 0157:H7) viruses, and
    parasites (such as Giardia) cause foodborne disease and microbiological
    contamination. Estimates for incidences of foodborne disease vary
    widely from 6 million to more than 33 million cases per year due to
    incomplete data and sporadic surveillance. Impacts of foodborne
    illnesses range from mild to severe cramps and diarrhea which can cause
    a range of mild to severe illness, paralysis and sometimes death.
        As part of the Presidential Food Safety Initiative, CDC is a
    partner with the United States Department of Agriculture and the Food
    and Drug Administration to combat infectious foodborne hazards.
    Collaboratively, these agencies have established FoodNet, the foodborne
    disease component of the CDC Emerging Infections Program. FoodNet
    provides a network for responding to new and emerging foodborne disease
    of national importance, monitoring the burden of foodborne diseases,
    and defining the source of specific foodborne diseases so that proper
    action and prevention measures can be taken. The major components of
    FoodNet are active laboratory based surveillance, surveying clinical
    laboratories and physicians for cases of foodborne illnesses, surveying
    the population and conducting case-control studies using patient
    samples including antibiotic resistance testing. FoodNet was
    established in 1995 at five sites in Minnesota, Oregon, Georgia,
    California and Maryland. 14.7 million people or 6 percent of the U.S.
    population are ``covered'' by this foodborne disease surveillance
    system. The ASM supports the additional $10 million the Administration
    has requested to expand the FoodNet program to 8 states which will lead
    to a more effective early warning system which will detect outbreaks
    earlier and should lead to the prevention of illness and death from
    foodborne pathogens.
    Conclusion
        The CDC is the primary federal agency responsible for guarding the
    public's health, including, among other activities, safeguarding the
    food and water supply and investigating outbreaks of potentially life
    threatening infectious diseases. The CDC has developed a strategic plan
    to address emerging infectious diseases and was able to begin
    implementation of this plan three years ago. The strategic plan,
    ``Addressing Emerging Infectious Disease Threats: A Prevention Strategy
    for the United States,'' emphasizes surveillance and targeted research
    and prevention activities to maintain a strong defense against
    infectious diseases that threaten the public's health. The ASM supports
    the Administration's fiscal year 1998 CDC budget request which includes
    a total of $112 million for infectious diseases. The additional $25
    million proposed for fiscal year 1998 ($15 million for infectious
    disease, $10 million for foodborne diseases) would allow the CDC to
    continue implementation of the emerging disease plan by expanding the
    five networked domestic surveillance sites to seven sites. These sites
    are linked electronically and allow for a more rapid dissemination of
    information and increased ability to detect pathogens and antimicrobial
    resistance. These funds would also increase the number of states
    receiving additional critical and technical resources to investigate
    infectious disease outbreaks.
        The ASM would like to thank you for your continued support for CDC
    funding and recognition of its unique role in combating infectious
    diseases. There have been a proliferation and increase in the numbers
    and types of infectious diseases being identified and diagnosed both
    here in the United States and abroad. Infectious diseases remain the
    single most prevalent cause of death worldwide, and are the third
    ranked cause of mortality of Americans of all ages. The extraordinary
    resilience of infectious microbes which have a remarkable ability to
    evolve, adapt, and develop resistance to drugs requires the nation's
    attention and resources to prevent unnecessary human suffering.
        Thank you for considering our request and recommendations for the
    CDC. We would be pleased to provide further information and to assist
    the Subcommittee as the appropriations bill for Labor, HHS, and
    Education moves forward.
                                     ______

     Prepared Statement of Mark L. Batshaw, M.D., on Behalf of the Mental
          Retardation and Developmental Disabilities Research Centers
        Mr. Chairman and Members of the Committee: I am Mark Batshaw and I
    am the Physician in Chief of the Children's Seashore House at the
    University of Pennsylvania's School of Medicine. It is my pleasure to
    submit for the record this testimony on behalf of the Mental
    Retardation and Developmental Disabilities Research Centers. There are
    currently fourteen such centers that support the work of the National
    Institutes of Health--with a special focus on the National Institute of
    Child Health and Human Development (NICHD).
        NICHD devotes its research to ensuring the birth of healthy babies
    and the opportunity for each infant to reach adulthood and achieve full
    potential, unimpaired by physical or mental disabilities. This is
    clearly a mission that deserves our support. In order to accomplish
    this goal, we need to continue to invest in this important research
    institute and in the Mental Retardation and Developmental Disabilities
    Research Centers. We therefore recommend that the NICHD receive $690
    million in funding for fiscal year 1998. We also recommend an increase
    of 9 percent overall for the National Institutes of Health.
        In order to accomplish its broad mission, NICHD is structured by an
    intramural program, which largely targets basic research related to
    human development, and an extramural program which includes the Center
    for Population Research, the Center for Research for Mothers and
    Children, and the National Center for Medical Rehabilitation Research.
    In addition, the NICHD has long served as a strong example of an
    institute that looks not only to the physiological factors affecting
    health, but recognizes the importance of behavioral, social,
    environmental and genetic factors to health outcomes as well. The
    fourteen Mental Retardation and Developmental Disabilities Research
    Centers pursue biomedical and behavioral research that will lead to
    understanding the causes of mental retardation and other developmental
    disabilities.
        NICHD and MRDD Research Center research has made major
    contributions toward preventing mental retardation and other
    developmental disabilities. The most celebrated screening program is
    the one for PKU, a metabolic disorder that causes mental retardation.
    Research on PKU led to the finding that a special diet could prevent a
    newborn with PKU from becoming mentally retarded. MRDD Research Center
    research also established the dangers of maternal alcohol consumption.
    In addition, MRDDRC research identified lead as a major cause of mental
    retardation--even at levels that previously were considered safe.
        It is evident that research conducted at the Mental Retardation and
    Developmental Disabilities Research Centers, with support and funding
    from the NICHD, demonstrates considerable cost savings as well as
    making a real difference in people's lives.
        Exciting New MRDD Research Center Research:
    Early Intervention
        Recent work on brain development strongly suggests that early
    educational and language instruction actually re-wires the brain of the
    developing child.
        Research designed to better understand the processes underlying
    neuroplasticity may make it possible to increase this window of
    opportunity for early intervention which is so critically important for
    children with disabilities. The NICHD has just launched a major autism
    research program based at Yale University, UCLA, University of Chicago,
    University of Pittsburgh, and the University of Washington. The
    research study is designed to provide a better understanding of ways to
    prevent and treat autism, and to provide a better understanding of ways
    to provide more targeted educational services to youngsters with autism
    spectrum disorders. It appears that many children in the early stages
    of autism spectrum disorders can be spared from developing the most
    seriously debilitating symptoms through intensive early language and
    social intervention.
    Genetic Research
        Advances in genetics research methods have now made it possible to
    explore the relation between genetic errors and specific behavioral and
    psychological consequences of those defects. Projects on Fragile X
    Syndrome, Rett Syndrome, Down Syndrome and other genetic disorders have
    made substantial strides in recent years. Research sponsored by NICHD
    at Baylor, Yale, UCLA, Harvard, and Vanderbilt Universities have linked
    specific errors on human Chromosome 15 to highly specific behavioral
    disorders of major health importance. Research has shown that most
    people with Prader Willi Syndrome, a genetic disorder which also causes
    life threatening obesity, also have Obsessive Compulsive Disorder
    (OCD), a psychiatric disorder affecting 5 million Americans.
    Researchers are homing in on the critical region of Chromosome 15 to
    identify which genes in this region are responsible for specific
    aspects of this condition. Once the gene product is identified, the
    search for a more effective treatment, or even a cure is possible.
    Mental Retardation and Language
        One of the most important aspects of children's early language
    learning is the ability to understand the concept of categories. This
    is a specific skill deficit for many children with mental retardation.
    If a child is unable to understand the idea that each category of
    things has properties in common that differentiate them from other
    categories of things, they are at an enormous disadvantage.
        Research at the Eunice Kennedy Shriver Center (an NICHD-funded
    MRDDRC) in Waltham, Massachusetts and at the University of Kansas
    MRDDRC, has led the way in clarifying exactly how children or older
    individuals with disability learn such relationships. Techniques
    developed at these two MRDDRCs have made it possible to teach such
    relationships to people with severe disabilities which previously was
    thought to be impossible.
        Work Continues:
    Self-Injurious Behavior
        Successful treatments have been developed to reduce self-injurious
    behavior in some individuals with mental retardation. Many people with
    mental retardation are forced into restrictive living settings, not
    because of their mental retardation, but because of their tendency to
    harm themselves. MRDDRC researchers have found changes in brain
    chemistry that cause self-injurious behavior, as well as medications
    that correct them. Combined with positive behavior management
    techniques, many of these individuals with experience a marked
    reduction in their self-injurious behavior.
    Anomalous Genes
        MRDDRCs are making extraordinary progress in identifying anomalous
    genes that cause a variety of developmental disabilities, including
    Duchenne Muscular Dystrophy, Fragile X syndrome, Myotonic Dystrophy,
    and several enzyme deficiencies that cause mental retardation (e.g.,
    glycerol kinase and glutaric acidemia).
    Muscular Dystrophy
        Significant research involving gene therapy for Duchenne Muscular
    Dystrophy (DMD) suggests that the muscle deterioration responsible for
    the disability and premature death of young males can be halted. This
    effective intervention has the potential of changing the lives of the
    13,200 children that currently have DMD, and those 600 children who are
    born with it each year. Annually, it could also save our economy $60
    million in health and related services costs.
    Research on Cytomegalovirus (CMV) continues
        This common virus is now the most common cause of acquired mental
    retardation--affecting over 5,000 infants each year. Tests to confirm
    current and previous CMV exposure are more readily available. While
    neither a preventive vaccine nor a cure currently exists, additional
    research support could lead to these significant achievements in the
    next few years.
        Research conducted by NICHD has contributed substanially to the
    knowledge base regarding physical and behavioral aspects of maternal
    and child health, human reproduction and the prevention and
    amelioration of cognitive and physical disabilities. It has saved
    billions of dollars in related health, education and
    institutionalization costs. The current cost of institutional care of
    people with mental retardation is approximately $100,000 per person per
    year.
        Because estimates show that nearly half of all Americans have some
    type of disability, and new disabilities are still emerging, adequate
    funding for NICHD research remains critical. In many arenas, we sit
    poised on the threshold of major new discoveries and advances. In other
    areas, the work is only beginning. With these needs in mind, Mr.
    Chairman, I urge you to provide $690 million in funding for the NICHD
    for fiscal year 1998. Each dollar spent on research and prevention of
    disease and disability is the ultimate cost savings for the future.
                                     ______

       Prepared Statement of Annie V. Saylor, Ph.D., President, National
                         Alliance for the Mentally Ill
        Mr. Chairman and Members of the Subcommittee, my name is Annie
    Saylor, President of the National Alliance for the Mentally Ill (NAMI).
    I am sincerely appreciative for the opportunity to offer NAMI's
    position on funding for the National Institutes of Health, with
    specific focus on the National Institute for Mental Health (NIMH), and
    the Center for Mental Health Services (CMHS). In addition to
    representing the views of hundreds of thousands of families across the
    country, I testify as a sibling of an individual with a brain
    disorder--my sister was diagnosed with schizophrenia in 1985. Through
    advances in research and the development of new, state of the art
    medications, these individuals are able to live fuller and more
    productive lives.
        NAMI is the nation's largest grassroots organization dedicated to
    improving the lives of persons with severe mental illnesses, including
    schizophrenia, bipolar disorder (manic-depressive illness), major
    depression, and anxiety disorders. NAMI's membership includes more than
    140,000 people with brain disorders and their families, and 1,100 state
    and local affiliates in all 50 states, the District of Columbia, Puerto
    Rico, and Canada. NAMI's efforts focus on advocacy for
    nondiscriminatory and equitable federal and state policies, research
    into the causes, symptoms and treatments for severe mental illnesses
    and education to eliminate the pervasive stigma toward those who suffer
    from these serious brain disorders.
        Mr. Chairman, on behalf of all people with severe mental illnesses
    and their families, I would like to thank you for supporting increases
    in research funding these past two years. Without funds for the basic
    medical research to understand the brain, scientists would not have the
    fantastic new understanding of the brain that they now have, and
    continue to discover. Neuroimaging techniques, as an example, such as
    magnetic resonance imaging (MRI) and positron emission tomography (PET)
    have opened new windows into the terrain of the brain. These techniques
    have permitted scientists to identify mechanisms producing various
    malfunctions, eventually offering the hope that drugs can be developed
    that will target these brain areas. For these reasons, we believe that
    it is imperative to fund NIMH at a level of $764.1 million for fiscal
    year 1998.
        For too long, severe mental illness has been shrouded in stigma and
    discrimination. These illnesses have been misunderstood, feared,
    hidden, and often ignored by science. Only in the last few decades have
    we seen the first real hope for people with severe mental illnesses
    through pioneering research that has uncovered both a biological basis
    for these brain disorders and treatments that work.
        Research has proven that brain disorders are treatable. The current
    success rate for treating schizophrenia is 60 percent. The success rate
    for bipolar disorder has risen in recent years and now approaches 65
    percent. For major depression, the rate has climbed to nearly 80
    percent. These recent advances would not have been possible without
    substantial investment in biomedical research directed to the most
    complex organ in the human body, the brain.
        The treatment of schizophrenia and schizoaffective disorder is
    undergoing rapid change, with the introduction of second-generation
    antipsychotic drugs. By 1998, clinicians will need to know which of
    many first- and second-generation drugs to try with what type of
    patient. NIMH is currently proposing clinical trials to reform clinical
    guidelines and clinical practice. This initiative would explore the use
    of these new drugs for patients with various types of schizophrenia,
    including first-break, chronic, treatment-resistant, with comorbid
    substance abuse, and with associated depression. There is a similar
    need to assess the efficacy and patient characteristics of new
    anticonvulsant drugs being used for the treatment of bipolar disorder.
        Advances in the development of molecular models of disease,
    including the creation of genetically manipulated mice (transgenic)
    which mimic a specific disease, have created new and exciting
    opportunities to understand brain development and function. Genetic
    technologies have progressed rapidly. The increasing ability of
    scientists to manipulate the mouse genome has created remarkable new
    scientific opportunities to understand the development of the brain,
    brain function, and the genetics of behavior.
        One of the most important advances that resulted in the past decade
    has been in treatment for schizophrenia. The introduction of clozapine
    has helped thousands of patients with schizophrenia to leave mental
    hospitals, and in some cases, to return to school, hold a job, and live
    independently. NIMH research on the basic biology of clozapine's action
    has built the foundation for understanding how this drug works in the
    brain.
        Clozapine saves an average of $23,000 per patient annually. This
    translates into a total savings of approximately $1.4 billion each
    year; the savings are realized primarily through the reduction in the
    need for hospitalization. The annual costs of a new drug to treat
    schizophrenia is $4,500; annual hospital costs for persons with
    schizophrenia average $73,403. Thus, widespread use of drug therapy
    could save approximately $69,000 per patient annually.
        NIMH sponsored research findings support proposals to reduce the
    frequency of blood monitoring in clozapine-treated patients,
    particularly after the first six months of treatment. Reducing the
    blood monitoring from weekly to monthly (as is now done in Europe)
    would save 75 percent of the cost of safety monitoring, approximately
    $5,000 per year per patient, resulting in cumulative savings of $225
    million per year in the United States based upon the 60,000 patients
    currently receiving clozapine. This reduced blood monitoring also would
    increase the number of potential patients using the drug, some of whom
    currently avoid the treatment due to the weekly drawing of blood.
        NIMH supported research is also offering new hope to people who
    suffer bipolar disorder. For some people with bipolar, also known as
    manic-depressive illness, lithium treatment does not work at all. For
    others, lithium may lose its effectiveness due to the development of
    tolerance or treatment interruptions. Recent NIMH clinical research
    have shown that two other drugs that were originally developed as
    anticonvulsants, carbamazepine and valproate, are effective for some
    manic-depressive patients who do not respond well to lithium. NIMH
    research aims to increase the treatment options for manic depressive
    illness and to learn how to target different drug therapies to the
    needs of individual patients.
        Mr. Chairman, through your leadership in supporting increases for
    research at NIH and NIMH we have been able to see this rapid progress
    continue. As your Subcommittee was told last year by a panel of Nobel
    laureates, brain research offers the most tremendous potential for
    advances in basic science and clinical treatment. These investments
    will certainly prove critical in improving public health and extending
    life expectancy for decades to come.
        According to a study by the World Health Organization, diseases
    such as major depression, schizophrenia, and bipolar illness currently
    make up about 40 percent of the total loss of health life due to
    noncommunicable disease This figure is expected to climb to 60 percent
    by the year 2020. It is important to note that while unipolar major
    depression is ranked as the fourth highest costly disease in 1990, the
    study projects that it will become the second highest ranking disease
    by 2020, outranking road-traffic accidents, cancer, and infectious
    diseases. In addition, bipolar disorder, schizophrenia, and obsessive-
    compulsive disorder are all expected to climb into the top 25 diseases,
    making continued research on serious brain disorders a top priority.
        In the U.S., severe mental illnesses account each year for more
    than $148 billion in direct health care costs, and indirect costs, such
    as lost work days for patients and care givers. In a given year, these
    disorders account for 25 percent of all federal disability payments
    (Social Security Insurance and Social Security Disability Insurance).
        Mr. Chairman, in addition to urging the Subcommittee to support
    increased funding for brain research, I would also like to make note of
    the importance of federally funded mental illness services through the
    Center for Mental Health Services (CMHS). Federal support for
    community-based care is a critical resource for people with the most
    severe mental illnesses. With many states reducing their inpatient
    hospital beds and a growing number moving toward managed care systems,
    the federal investment in community-based care continues to grow in
    importance. For example, funding for the Mental Health Performance
    Partnership now constitutes nearly 40 percent of all non-institutional
    services spending in many states.
        Services such as case management, crisis intervention and
    psychosocial rehabilitation are critical in enabling people with the
    most severe mental illnesses to live productive lives in the community.
    As you know, many programs within the CMHS budget have not received
    increases to account for inflation in nearly five years. Moreover,
    recent changes in federal law such as welfare reform and restrictions
    on eligibility for SSI and SSDI for people whose disability is based in
    part on drug abuse or alcoholism are now placing tremendous pressure on
    local treatment and support systems.
        These programs, particularly the Mental Health Performance
    Partnership, PATH, Children's Mental Health and Knowledge Development
    and Application Demonstrations, are critical to our nation's public
    mental health system. Increasing funds for these programs is vital, in
    order to keep pace with higher demand for services and the absence of
    inflation adjustments over the past five years.
        In summary, NAMI urges you to support a funding level of $764.1
    million for fiscal year 1998 for funding of the National Institute of
    Mental Health. This is not only what our families want--it's what they
    need.
        Mr. Chairman, thank you for the opportunity to offer my views on
    fiscal year 1998 funding for programs of critical importance to people
    with serious brain disorders. We look forward to working with you in
    the coming months to educate both the general public and your
    colleagues in Congress on the critical importance of investment in
    biomedical research.
                                     ______

        Prepared Statement of the National Coalition for Cancer Research
        The National Coalition for Cancer Research appreciates the
    opportunity to submit testimony for the written record.
        The Coalition is comprised of 18 not-for-profit lay and
    professional organizations devoted to the pursuit of cancer research.
    Today I represent these organizations which consist of 55,000 cancer
    researchers, nurses, physicians, and health care workers; tens of
    thousands of cancer survivors and their families; 40,000 children with
    cancer and their families; 82 cancer hospitals and cancer centers
    across the country; and more than 2 million volunteers.
        The National Coalition of Cancer Research commends the Chairman and
    the Subcommittee Members for their past commitment to cancer research.
    The Coalition recognizes that the Subcommittee is pressed with
    providing funding for programs that train our workforce, educate our
    children, and strengthen the health of the nation. We further realize
    that a myriad of issues surround the many aspects of cancer alone,
    especially since it is a major social and economic burden to our
    society. Within this complex mix, the Subcommittee has made biomedical
    research a priority. The Coalition commends the Subcommittee's
    attention to the need for adequate funding for biomedical research
    because, without doubt, research is the gateway to progress against
    cancer.
        Cancer is a complex of many diseases. The origins of these cancers
    are multifactorial--an interplay between genetics and the environment.
    During recent years, molecular geneticists have been unraveling the
    mysteries of carcinogenesis and providing new hope for better means of
    controlling the disorder. However, despite the declining death rates of
    the past few years, in the United States, men have a 1 in 2 lifetime
    risk of developing cancer, and women have a 1 in 3 risk. Cancer is
    still the second leading cause of death and is expected to be the
    leading cause of death by the turn of the century. The direct costs of
    health care services to cancer patients is currently estimated at $100
    billion annually and is increasing each year.
        It is the Coalition's central conviction that the solution to the
    complex problems surrounding cancer--the reduction in morbidity,
    mortality, and the high costs of medical care--will come in a stepwise
    manner from the generation of new knowledge through research. The
    prospects for meaningful progress are good.
        As a national priority, our investment in cancer research has paid
    tremendous human and economic dividends. The contributions of cancer
    researchers in government, industry and academia have been pivotal in
    saving lives and in shaping a global preeminence in medical research
    for the United States.
        During the past 25 to 30 years, more has been learned about the
    workings of the human body and the abnormalities caused by disease than
    throughout all prior centuries. With respect to cancers, increasing
    knowledge of the molecular events involved in cause and progression
    should lead to increasingly effective means of protection and
    treatment. At the end of March, NIH supported researchers at M.D.
    Anderson Cancer Center discovered a gene involved in fatal brain
    tumors. The finding and capturing of the gene was characterized as one
    of the biggest breakthroughs in brain tumor research in over 20 years.
    Just last week it was announced that NCI supported researchers at the
    University Hospitals and Case Western Reserve in Cleveland, have
    discovered that a component found in artichokes can prevent skin
    cancers caused by repeated exposure to ultraviolet rays. Realizing
    breakthrough treatments begins with research discovering these
    findings.
        The discoveries referenced above are due to the Subcommittee's past
    support of research. Last year the Committee provided almost $12.8
    billion to the National Institutes of Health; of which $2.2 was
    allocated to the National Cancer Institute. The President has requested
    an increase of $61 million, or 2.8 percent, in fiscal year 1998 for the
    NCI. We feel that the current appropriation and the fiscal year 1998
    request for cancer research are too low. This is especially true when
    one considers the fact that basic research fuels a large commercial
    enterprise that is important to the U.S. economy. In fact, in several
    States, such as New York and California, the health care industries are
    one of the top two employers.
        The Coalition is concerned that because our annual investment in
    cancer research is merely: 2.3 percent of the total cost of cancer in
    the U.S.; .0004 percent of our GDP, equivalent to an investment of
    $10.40 per person--a little more than the price of one movie ticket a
    year!
        Health care costs for cancer exceed $104 billion annually and over
    half of the medical costs of cancer are due to the treatment of breast,
    lung and prostate cancers. However, we only invest about 2 percent of
    cancer's health care costs in research to find effective prevention
    measures, treatments and cures for cancer. There is no company in
    America that can keep the doors open if they only invest 2 percent in
    developing innovative products.
        The Coalition supports the Congressional leadership, demonstrated
    in S. Res. 15 and S. 124, which set the course to double the budget of
    the National Institutes of Health, including the National Cancer
    Institute. We strongly recommend that the fiscal year 1998
    appropriation for the National Cancer Institute be an increase of 15
    percent as the first step toward doubling the appropriation for the NCI
    within five years.
        How could a doubling of the NCI's budget be effectively used? A
    doubling of the budget for the NCI is a sound investment which will
    enable the following:
      --fund a greater proportion of fully approved investigator initiated
            research applications;
      --support of the priorities identified in the By Pass Budget,
            including cancer genetics, preclinical models of cancer,
            detection technologies; developmental diagnostics;
      --strengthened efforts in translational research to more rapidly
            translate research progress from the bench to the bedside;
      --initiatives to incentivize the research collaboration and establish
            a strong partnership between the government, academia and
            industry to maximize our research investment;
      --expand cancer prevention and detection research programs;
      --strengthen our current efforts in cancer survivorship research to
            ensure the highest quality of life after cancer; and,
      --added support, such as the NCI scholars program, to enable
            outstanding new investigators in basic, clinical or population-
            based biomedical research to establish independent research
            careers.
        In order to be most effective, funding must be provided in a manner
    that enhances creativity--encourages the risk taking inherent in
    innovation. Research funding must be sustained, also, in order to
    prevent the detrimental interruptions to investigators and research
    institutions that have long lasting effects.
        Maintaining the integrity of a group of top-notch academic health
    centers and strengthening a related group of research universities is
    of vital importance. Clearly, these institutions provide the
    ``environment'' and many of the resources necessary to a full spectrum
    of investigational and educational programs.
        The preservation and enhancement of these centers of excellence is
    an urgent matter of public concern. The chaotic conditions of the
    ``health care marketplace'' and the increasingly severe financial
    constraints that result, are forcing academic health centers devoted to
    research and education toward the ``endangered species'' designation. A
    strong and vital national research program is one of the cornerstones
    of preservation for these centers.
        Patient-centered research merits careful attention because it is
    the link between laboratory discoveries and the advances in prevention,
    diagnosis and treatment that improve medical practice and the quality
    of life of patients and their families. This transition is currently
    threatened by the practices of various health care management companies
    and by the payment practices of insurers. Further, the nominal support
    provided by the NCI to this endeavor--less than 10 percent of NCI's
    total budget--is causing many talented clinical researchers to go the
    way of the dinosaur as they are forced away from research and into
    clinical practice.
        It should be remembered that in many circumstances (e.g., certain
    cancers, multiple sclerosis, Alzheimer's disease) experimental therapy
    administered under the aegis of a fully approved clinical trial is the
    best therapy available to many patients. It is important that patients
    not be denied access to clinical trials. The knowledge gained through
    these studies is important to progress, and the treatment offered may
    represent the best alternative available to the patient participants.
    Yet insuring participation in clinical trials due to charges in the
    health care marketplace is compromising our capacity to translate
    research from the laboratory bench to the bedside.
        Progress depends in no small extent on insuring the continued and
    sustained renewal of the intellectual resources at the heart of the
    creative process--the dedicated, highly educated, creative scientists
    that determine the success of these endeavors. Regrettably, there is a
    trend of the ``brightest and best minds'' in our country away from the
    biomedical sciences into careers that appear more challenging and a
    more important part of our nations future. This trend must be reversed.
        Of NCI's five medical research ``areas of emphasis,'' to which a
    large percentage of the Administration's requested increase will be
    directed, the Coalition is particularly supportive of the ``genetics of
    medicine'' initiative. Our knowledge of ``cancer genetics'' is
    expanding rapidly and promises great benefits to people at risk of
    developing cancer. The full realization of this potential will involve
    patients in research protocols and apparently healthy family members,
    as well. The complex scientific and social issues that surround
    ``genotyping'' endeavors are well known and do not merit repetition
    here. However, a constructive disentanglement of the issues and the
    development of rational and socially responsible policy guidelines in
    critical areas will facilitate future research of great importance to
    society at large.
        The Senate's appropriations for cancer research in the past are a
    success story. Over a million Americans are alive today--largely
    because of the Subcommittee's commitment to this cause. Further,
    continuing commitments:
      --create American jobs since 85 percent of the money appropriated to
            the National Cancer Institute (NCI) is invested in research
            institutions across the country. Each year, NIH grants
            contribute toward an estimated at $44.6 billion in sales; $17.9
            billion in employee income, and over 726,000 jobs;
      --support the basic research engine which provides the basis for our
            biotechnology and pharmaceutical industries to translate
            research progress from the laboratory to the patient;
      --The biotechnology and pharmaceutical industries together contribute
            some $100 billion annually to the American economy supporting
            200,000 high-paying, high skilled jobs;
      --There are 215 drugs in development by 98 research-based
            pharmaceutical companies and the National Cancer Institute;
            and,
      --The number of companies involved in cancer drug development have
            doubled in the past three years from 49 to 98.
        The number of drugs being developed has increased by 91 since 1993,
    contain health care costs, for example:
      --In a 1994 NIH report it is estimated that approximately $4.3
            billion invested in clinical and applied research supported by
            the NIH had the potential to realize annual savings of between
            $9.3 billion and $13.6 billion;
      --NCI-funded research has led to new technologies to make affordable
            and effective bone marrow transplantation as a treatment option
            for breast cancer. In a sample of over 800 patients, decreased
            death rates and health care costs resulted, reducing the costs
            of the transplantation from $140,000 to $65,000 per transplant;
      --A 17-year total investment by the government of $56 million in
            testicular cancer research has enabled a 91 percent cure rate,
            with an increased life expectancy of 40 years, and a savings of
            $166 million annually; and,
      --An $11 million NIH-supported study of breast cancer realized a
            savings of $170 million annually in the management of women
            with breast cancer.
        The costs, both human and economic, of cancer in this country are
    catastrophic. Our national investment in cancer research remains the
    key to bringing down spiraling health care costs, as treatment, cures
    and prevention remain much cheaper than chronic and catastrophic
    diseases, like cancer.
        Finally, the National Coalition for Cancer Research opposes:
      --earmarks in cancer research funding which are not accompanied by
            new (additive) resources; and,
      --arbitrary reductions, through a cap or across-the-board cut, in the
            facilities and administrative costs associated with the conduct
            of research. These research tests, referred to frequently as
            indirect costs, are a legitimate cost of research. The ongoing
            regulatory review of indirect cost payments is a rational
            approach to addressing government-wide cost reimbursement.
        The Coalition of Cancer Research thanks the Subcommittee for this
    opportunity. The Coalition hopes that the Senate Subcommittee will find
    the rationale on which the Coalition bases its recommendations to focus
    on cancer research compelling, and that the Subcommittee will be able
    to direct funds to cancer research to open the doors for researchers to
    find new methods for the prevention and treatment of cancer.
                                     ______

        Prepared Statement of the Fred Hutchinson Cancer Research Center
        The Fred Hutchinson Cancer Research Center (FHCRC) appreciates the
    opportunity to submit public witness testimony for the written record
    as the Labor, Health and Human Services, Education and Related Agencies
    Subcommittee prioritizes programs for fiscal year 1998. Our testimony
    will address the following priorities:
      --Funding for the National Cancer Institute (NCI) and the National
            Institutes of Health (NIH), Basic and Clinical Research Funding
            and Women's Health Initiative; and,
      --Funding for the Centers for Disease Control and Prevention (CDCP),
            Hanford Thyroid Disease Study.
        The FHCRC is a non-profit, federally-funded Comprehensive Cancer
    Center whose mission is the elimination of cancer as a cause of human
    suffering and death. The Hutchinson Center carries out a multi-
    disciplinary strategy:
      --Biological scientists conduct fundamental research to discover
            mechanisms underlying the life of normal cells and the changes
            in these processes that cause disease;
      --Clinical research scientists develop and test new forms of
            diagnosis and therapy; and,
      --Public health scientists develop and apply new knowledge to help
            individuals and communities reduce the occurrence of, and
            mortality from, cancer and related diseases.
        The FHCRC has achieved international excellence in medical
    research. We were the pioneer in bone marrow transplantation and the
    1990 Nobel Prize in Medicine was awarded to Dr. E. Donnall Thomas for
    his work in this regard. Today, more than 400 patients from the United
    States and throughout the world come to the FHCRC for bone marrow
    transplants each year, and we perform this procedure more than any
    institution. To date, more than 6,000 patients have received a bone
    marrow transplant at the FHCRC.
        Biomedical research has a tremendous economic impact on the Seattle
    metropolitan area. The FHCRC is one of the nation's largest recipients
    of NCI support and our workforce of nearly 2,000 includes more than 500
    employees who hold either M.D. and/or Ph.D. degrees. Many other FHCRC
    employees are health professionals also. Further, Seattle is home to
    one of the nation's largest concentrations of biotechnology firms, the
    majority of which are working in health care. The FHCRC's laboratories
    have led to the establishment of 11 biotech companies.
        Biotechnology can be thought of as an example of what the
    government does best. By creating strong research and university
    systems, proactive technology transfer regulations, and pro-business
    regulatory and tax codes, the federal government can make it possible
    for the most promising research opportunities to be tested, developed,
    and marketed.
            national cancer institute/national institutes of health
        The FHCRC strongly supports a federal cancer program that supports
    the full breadth of cancer research priorities in basic science, as
    well as clinical and translational initiatives. Research project grants
    (RPGs) are a major catalyst for research breakthroughs, yet
    translational and clinical research programs are no less important--the
    knowledge that is gained from basic research will not benefit the
    cancer patient unless it can be ``translated'' from the ``bench to the
    bedside.'' The NCI must have the capacity to support the full range and
    appropriate mix of all types of research. In addition, today's cost
    containment health care marketplace threatens to compromise our ability
    to bring basic research breakthroughs to the cancer patient, as health
    insurers are increasingly unwilling to support unproven therapies. We
    urge you to work diligently with your colleagues on the Finance and
    Ways and Means Committees to insure that no barriers exist to
    individuals with cancer who are willing to participate in clinical
    trials.
        Research opportunities in cancer have never been greater. We are at
    a critical crossroads in which our progress on all research fronts--
    cancer biology, molecular genetics, prevention, clinical and
    translational research--has positioned the nation to make tremendous
    strides in areas fundamental to human cancer. Researchers are
    optimistic about their ability to develop cancer-specific drugs and
    therapies so that ``good'' cells are not killed with cancerous cells.
        Breakthroughs in genetic research are also a reason for optimism.
    The discovery of the BRCA1 breast cancer gene holds tremendous promise
    for women who have a family history of the disease due to a genetic
    defect. Women who inherit a flawed BRCA1 gene have up to an 85 percent
    risk of developing breast tumors in their lifetimes. By identifying
    these women, we can improve our ability to detect and treat their
    disease early. Ninety percent of patients with the earliest forms of
    breast cancer are cured and investigators at the FHCRC are hard at work
    to cure more advanced forms of the disease.
        In addition, significant new research opportunities into prostate
    cancer are emerging. The Hutchinson Center is studying prostate cancer
    from several angles with new projects beginning each year. Researchers
    at the Center are evaluating how diet relates to prostate cancer risk;
    testing the drug finasteride as a possible preventive measure; and
    conducting genetic research that, in the future, may lead to tests for
    early detection of prostate cancer and therapies that will cure it.
        The impact of cancer is significant in both health and economic
    terms. Cancer will kill more than 560,000 men, women, and children this
    year--more than 1,500 every day, and cancer is expected to be the
    leading cause of death by disease by the year 2000. However, basic and
    clinical research in cancer are progressing and the scientific
    opportunities that exist are very encouraging. To exploit these
    research opportunities the FHCRC supports a doubling of NIH
    appropriations over five years, as proposed by Senator Mack in S. Res.
    15 and by Congressmen Gekas and Porter in H. Res. 83. This would
    require a 15 percent increase for fiscal year 1998. As an absolute
    floor, we support the recommendation of the Ad Hoc Group for Medical
    Research Funding for a 9 percent increase in fiscal year 1998.
    Women's Health Initiative
        The FHCRC is the national coordinator of the 15-year Women's Health
    Initiative sponsored by NIH. The Women's Health Initiative is a cross-
    institute study regarding the prevention of conditions affecting post-
    menopausal women, including cancer. It is the largest study of women's
    health issue ever undertaken and the clinical trial component of the
    study will involve more than 46,000 subjects. We urge your continued
    support of this important study to enable it to remain on schedule.
    Facilities and Administrative Expenses
        Facilities and administrative expenses are as much a part of the
    real and necessary costs of medical research as are direct costs. While
    these costs are not directly attributable to a specific research
    project, they cover operations support such as utilities, maintenance,
    plant operation, administrative costs, library expenses, and
    depreciation. Further, a significant portion of facilities and
    administrative expense is the direct result of federal regulations,
    including auditing requirements, animal care, hazardous and other
    environmental standards, laboratory standards, etc.
        Perhaps the most critical component of facilities and
    administrative expense is facility depreciation. Since the depreciation
    period is much longer than the period budgeted for research projects,
    this portion of facilities and administrative expense is critical to
    enable the FHCRC and other institutions to maintain the world's best
    scientific facilities. An arbitrary change in the facilities and
    administrative expense formula would diminish our ability to provide
    quality scientific facilities for the future and would dramatically
    affect our ability to repay long-term debt, which is based on
    agreements made years ago. We recognize the interest that this
    Committee has had in the past regarding facilities and administrative
    expenses. We urge the Committee to continue to support the regulatory
    oversight of this important policy initiative.
                         hanford thyroid disease study
        In 1988, Congress directed the Centers for Disease Control (CDC) to
    conduct a study of thyroid morbidity among persons who lived near the
    Hanford Nuclear Site between 1944-1957. The Hanford Thyroid Disease
    Study (HTDS) will determine whether thyroid morbidity is increased
    among persons who were exposed to releases of radioactive iodine from
    the Hanford site relative to persons who received a very low or
    negligible dose. This research will provide the only pivotal data in
    existence to determine the long-term health effects in people who were
    exposed to radioactive iodine from Hanford.
        The CDC awarded a contract to the FHCRC in 1989 to carry out this
    mandate, and based upon the current contract configuration, the study
    is projected to be completed this year. The CDC has funded the study
    since 1989. Further, the U.S. Department of Energy provided
    supplemental support through a Memorandum of Understanding in fiscal
    years 1995-1997. The HTDS is in its eighth year and $3,800,000 in
    federal funding is required to complete the project in fiscal year
    1998. It is of paramount importance that these resources by made
    available in fiscal year 1998 so as to bring the study to conclusion
    without postponement. Otherwise, it is expected that the costs for the
    study will increase if it is not completed in fiscal year 1998.
        Thank you for your consideration of our request.
                                     ______

      Prepared Statement of Donald S. Coffey, Ph.D., President, American
                        Association for Cancer Research
        As President of the American Association for Cancer Research
    (AACR), a professional society consisting of 13,000 scientists who
    conduct laboratory, clinical, and translational research, I am
    privileged to submit this testimony on behalf of the AACR. A
    substantial number of our members are directly involved in the
    treatment and care of persons with cancer, while the rest are dedicated
    to the basic and translational research needed to develop better
    diagnosis, treatment, and prevention of cancer.
        I would like to take a moment to thank this Committee for its
    extraordinary support and leadership on behalf of the National
    Institutes of Health (NIH) and the National Cancer Institute (NCI). The
    AACR is fully aware of the restrictive fiscal environment with which
    Congress is faced and we are most appreciative of the fact that the
    Members of the Committee have made NIH and NCI a top priority.
        First, I would like to point out that one out of every three
    Americans will develop cancer. These citizens may be faced with the
    need for toxic, sometimes life-threatening, but also potentially
    curative treatment.
        The problem of cancer is immense. Each year, 1,400,000 Americans
    are diagnosed with cancer and for 560,000 Americans cancer is a death
    sentence. Contrast this with the fact that 291,000 Americans gave their
    lives in the four-year course of World War II. Cancer is an intolerable
    national tragedy that can no longer be accepted. Even more intolerable
    is the pervasive, defeatist attitude that cancer cannot be cured, and
    that research advances have not substantively changed the lot of the
    person diagnosed with cancer.
        Twenty-five years ago the nation enacted legislation to wage a war
    against cancer, funding a program of research, the establishment of
    cancer centers, and the development of national programs to improve
    diagnosis and treatment. The progress made has been extraordinary. Yet
    now, at a time when the possibility of eliminating these diseases has
    never been greater, we are facing a critical loss of national will.
    Although I recognize the heavy responsibilities that you bear to
    control the national debt and to guide the judicious use of funds
    provided by American citizens, I am still struck dumb by the
    extraordinary tragedy of the current funding situation for cancer. The
    cost of care for persons with cancer exceeds $104 billion annually, yet
    the research budget proposed for cancer is only $2.4 billion. No
    company in America would stay in business with such a paltry research
    and development investment. No general would ever go to war with such
    limited resources. What a terrible irony: $61 billion was spent on the
    Gulf War, a sizable proportion of which was used to ensure that no more
    than 10,000 Americans lost their lives; yet we tolerate 560,000 deaths
    from cancer every year--one person every 57 seconds. We also accept the
    fact that our nation's programs of clinical research, which have led in
    the development of curative treatments for many cancers, are accessed
    by no more than 6 percent of the nation's adults afflicted with these
    diseases.
        Some say that the amount of money proposed for cancer research is
    enough. This is an erroneous contention, and the AACR challenges it
    vigorously. Indeed, can we responsibly accept this status quo, when so
    many are suffering from cancer and the continuing inadequacies of
    current diagnostic approaches and treatment? Before we ask you to
    consider what the AACR believes should be done, it is important to
    understand what has been accomplished, and what is not being done now
    because of a lack of support.
        When the National Cancer Act was enacted, a child with leukemia was
    believed to have an incurable disease. Less than 20 percent of these
    patients survived 5 years. It was deemed unethical at several academic
    centers to talk about a cure. Today, over 80 percent of children with
    acute lymphoblastic leukemia will be cured with intensive combinations
    of anticancer drugs. Advances in other pediatric cancers are no less
    dramatic. Indeed, prospects for cure have increased by 20-40 percent
    for all but one of the common pediatric cancers over the last 10 years
    alone. As a result, one out of every 900 Americans entering the 21st
    century will be a survivor of childhood cancer. Advances in the
    treatment of several cancers affecting adults have been no less
    dramatic. You have heard about the high cure rates now associated with
    Hodgkin's disease and several types of lymphoma. Strategies invoking
    intensive chemotherapy, surgery, and radiation are also making major
    inroads in the cure rates for men with testicular cancer and women with
    cancers of the breast and uterus. Even brain tumors, so long
    refractory, are now being cured in a significant proportion of
    patients. Application of intensive regimens coupled with genetically
    matched transplants from normal relatives has ensured cures for 50-80
    percent of patients afflicted with different forms of leukemia when
    such transplants have been applied early in the course of disease. The
    national effort spawned through the Congress which led to the
    development of the National Bone Marrow Donor Program now has over 2.4
    million volunteers, and over 1,500 such transplants are performed
    yearly, with success rates now approaching those achieved with matched
    transplants from siblings.
        Over the last ten years alone, a striking array of new, active
    drugs and biologicals has been introduced, many of which have already
    radically improved our capacity to treat and cure cancers. Examples
    include Taxol, which is the most active agent in the treatment of
    breast and ovarian cancer; the biological agents interferon and trans-
    retinoic acid and the drugs Fludarabine and 2CDA which have so
    profoundly improved our treatment of several leukemias; and the marrow-
    stimulating factors GCSF, GmCSF, and now thrompoietin which stimulate
    the recovery of blood cells after chemotherapy or radiation and allow
    us to treat many cancers in adults with a potentially curative
    intensity that previously could be applied only to children.
        Today, targeted agents are being introduced in clinical trials,
    agents that selectively kill cancer cells, prevent their spread, and
    inhibit their capacity to establish a blood supply: agents like
    immunotoxins (antibodies linked to toxic proteins), now being used to
    seek out and selectively kill leukemias, lymphomas and other tumors;
    proteinases that inhibit metastasis; angiogenesis inhibitors that
    inhibit the growth of blood vessels feeding tumors; and antisense
    molecules that selectively interfere with the activity of genes that
    permit cancerous growth.
        Many of the advances that have been made over the last 10 years in
    our diagnostic approaches to cancer will only be realized fully in the
    next decade. The widespread use of mammography to detect breast cancer,
    the use of colonoscopy and screening tests to detect traces of blood in
    the feces for earlier diagnosis of colon and rectal cancer, and the
    increasingly broad use of blood tests to detect prostatic specific
    antigen are already leading to earlier diagnosis, earlier treatment,
    and higher potential for cure. As a result, surveys conducted between
    1991-1995 by the NCI have detected a decline in the cancer death rate
    of nearly 3 percent, the first sustained decline since the 1930's, when
    such surveys were initiated. It is important to note, however, that
    certain cancers continue to wreak disproportionate damage on medically
    underserved populations and, in particular, on minorities; additional
    research is needed to understand and combat this phenomenon.
        Dramatic progress has also been made in research into the molecular
    events that lead to cancer and the genetic faults that predispose to
    cancer. Over the last few years, lessons learned about genes that, once
    mutated, can induce cancer growth, have led to the development of drugs
    that may selectively counter this process. We now also recognize a
    series of genes which, when mutated, identify a patient who is at risk
    for certain kinds of cancer later in life. The genes associated with
    inherited forms of colon cancer and the genes predisposing to breast
    cancer, such as BRCA1 and BRCA2, are but a few of the recent examples
    of progress in this area. We have also been able to identify a large
    series of genes that controls the genetic machinery of cells and
    prevents abnormal growth. These tumor suppressor genes, such as p53,
    the retinoblastoma gene, and others, can be altered during life or, in
    rare instances, can be passed in mutated form to the next generation,
    thereby limiting the cell's capacity for control of normal growth and
    radically increasing the chances of tumor transformation. What has only
    recently been recognized is that these same mutations in suppressor
    genes, which place a cell at risk for a transformation event, may also
    radically alter the resistance of that cell to the cancer drugs
    commonly used today. Thus, these mutations represent a double-edged
    sword: on the one hand, they increase a patient's chances for
    developing cancer; on the other hand, they decrease the chances that
    the patient can be effectively treated. While this presents an
    extraordinarily difficult obstacle to oncologists and cancer
    biologists, the ingenuity of scientists and the careful observation of
    clinical investigators have already demonstrated that the deleterious
    effects of these mutations can often be circumvented through the action
    of other genes or through the activity of biologicals which can insert
    normal controls where such controls are lacking.
        We have also begun to see the fruits of a long and often
    frustrating campaign of research aimed at understanding and harnessing
    the body's resistance systems to fight cancer. For example, in the last
    two years, clinical investigators have discovered that immune cells
    from normal donors can induce durable remissions of certain forms of
    human leukemia and virus-induced lymphomas. New approaches have been
    developed for isolating peptide fragments of proteins selectively
    expressed on tumor cells, making possible the development and clinical
    trials of vaccines for melanoma and certain other forms of cancer.
    Immunization strategies that use specialized cells bearing cancer-
    associated peptides to stimulate the immune system are now being
    introduced for other solid tumors, including prostate cancer.
        Thus, if we look back on the last 25 years, considerable progress
    has been made and this progress has been translated into significantly
    improved cure rates for several lethal cancers affecting men and women.
    Unfortunately, however, as the complexity of science has increased and,
    conversely, the complexity and, often, the toxicity of modern
    treatments have escalated, the valley between those discovering
    molecular relationships in the laboratory and those who translate those
    discoveries into meaningful treatments has widened and deepened. There
    has also evolved a disturbing and inaccurate perception that the
    process of new discovery is a one-way street, from the laboratory to
    the bedside. But discoveries made by clinical scientists observing
    disease may have effects no less profound. For example, clinical
    scientists studying myeloma discovered malignant B-cells producing the
    homogeneous antibody molecules that started modern immunochemistry and
    ultimately led to the development of monoclonal antibodies. Similarly,
    clinical observations led to the discovery of the effects of Vitamin A
    derivatives on promyelocytic leukemia, opening a whole field of
    scientific inquiry into the signaling pathways controlling blood cell
    maturation. The rapid progress now being made in cancer genetics has
    been catalyzed by extraordinary advances in our capacity to analyze DNA
    at the molecular level, yet it is observations made by clinicians
    tracing pedigrees of families in which multiple members have been
    afflicted with retinoblastoma, Wilms' tumor, breast or ovarian cancer,
    and colon cancer that have provided a foundation making rapid advances
    possible. The path to discovery is multifaceted, dependent on
    continuous productive interactions between basic and clinical
    scientists both in the laboratory and at the patient's bedside.
        Some scientists argue that our current knowledge of the events that
    lead to cancer is still too fragmentary and immature. We agree. Yet,
    the opportunities provided by the many discoveries that have already
    been made could significantly improve prospects for cure for many
    people who now despair. Our critical needs at this time for research in
    cancer are two-pronged. First, at a basic level, we need to understand
    better the events that lead to cancer, and to construct strategies to
    interfere selectively with that process. Second, we need to develop
    further the infrastructure for translational and clinical research
    necessary to translate this information into meaningful, clinically
    effective strategies for the diagnosis, treatment, and prevention of
    cancer in patients already afflicted with malignancies and those at
    risk for developing cancer later in life. This two-pronged approach is
    critical if we are to develop treatments that more selectively target
    cancer cells or prevent their emergence.
        We have made dramatic advances against some cancers through
    research. For example, we have developed transplantation strategies
    which allow us to provide a normal blood system to any child or adult
    afflicted with leukemia or other lethal blood disease. Indeed, such
    transplants are the only curative approach and clearly a treatment of
    choice for several forms of leukemia. However, such treatments exact a
    great cost. To put this in perspective, in preparing a leukemia patient
    for transplant, we first attempt to eradicate the patient's cancer by
    administering doses of radiation equivalent to standing within 600
    yards of the epicenter of the bomb at Hiroshima. On top of that, we
    regularly give additional high doses of chemotherapy. A large
    proportion of patients are cured in this way, but we still lose many
    and, despite having survived this brutal treatment regime, some will
    later relapse with their disease. If we do not resolve to develop
    better therapies that are more targeted to kill cancer cells and to
    spare normal tissues, the legacy of our work will be a mixed blessing.
        Never in our history have we been more prepared through our science
    to develop such targeted approaches. Yet there is a real danger that,
    as close as we are, we will let this opportunity slip away. If we do
    so, future generations should judge us harshly. The only obstacle to
    continued progress and to the ultimate eradication of these horrific
    diseases is a lack of will and commitment. The ideas are there to be
    explored. The young creative minds are there whose commitment is no
    less ardent than those who have gone before. We must meet this
    challenge, take on this awesome task and commit our great nation to
    this profoundly worthy and achievable goal. We must not allow this
    unique time of promise and opportunity to slip away. People with cancer
    face death every day, accepting the challenge of this awful disease and
    the limited options for treatment with enormous grace. But they deserve
    better. Given the immensity of the cancer problem, can our nation
    afford to stand by while such a large portion of the citizenry is so
    gravely affected?
        To exploit the research opportunities that exist and to build on
    the promising developments of just the last few years alone, the AACR
    believes that a real War on Cancer is warranted. Congressional support
    of cancer research has been considerable over the past 25 years but far
    too much work remains to be done--and our casualty rate is far too
    high. The AACR urges that funding for the NCI be at least doubled.
        Why a doubling? The budget proposed for cancer research still funds
    too small a proportion of grants proposing important ideas and
    substantive programs of research--approximately half the rate as when
    the ``War on Cancer'' was declared in 1971. In addition, the budget
    simply does not provide the support necessary for the translational and
    clinical research required to move the basic discoveries made in the
    laboratory to persons with cancer and at risk for developing cancer.
        To demonstrate what could be done in contrast to what is not being
    done, compare the current status of clinical research applied to
    pediatric malignancies, which are rare, with that applied to cancers in
    adults. Since the early 1970's, the treatment of children with cancer
    has been considered a national priority by pediatricians and many
    supporting groups. Pediatric oncologists, who are almost exclusively
    based in academic institutions, formed effective cooperative efforts
    which were strongly supported by the American Academy of Pediatrics. In
    1996, of the 10,000 children estimated to develop cancer, over 9,500
    were registered in one of the two major cooperative groups and over 90
    percent were participating in the clinical research programs of these
    cooperative groups, either in diagnostic or therapeutic studies. As a
    result, advances made in cancer centers and research laboratories have
    been rapidly translated into national trials, testing best current
    treatments against what has often emerged as a better approach. Given
    the stepwise approach that has marked this program of clinical research
    and this level of national intensity, I suggest that it is perhaps not
    surprising that dramatic improvements in the treatment of children have
    been achieved. Contrast this with the treatment of adults, where less
    than 6 percent are registered with cooperative groups or cancer centers
    and only 1-2 percent are actually treated on research protocols testing
    the best available in current or future therapies. Given the fact that
    the entire history of cancer treatment has provided continuous
    testimony to the concept that clinical research is the best therapy, it
    is clear that expansion and indeed establishment of a truly
    comprehensive national effort is long overdue.
        What I have just talked about is the current situation. However, as
    the Senators know, the increasing impact of managed care organizations
    in decisions regarding where patients are to be treated and how they
    are to be treated threatens to restrict further the proportion of
    Americans who will have the best of current and developing therapies
    available to them. Patient access is a critical issue. Denying a child
    access to an academic center because it does not participate in a
    managed care plan more often than not will deny a child access to a
    pediatric oncologist trained in modern therapy and participating in
    national treatment protocols, potentially reducing that child's
    prospects for cure to those achievable in the 1970's and 1980's, but
    unacceptable today.
        Managed care companies have generally taken the position that they
    will not pay for costs associated with clinical research. Indeed, in
    certain plans, patients are specifically precluded from entering
    clinical trials. Given the existing inadequacies and the
    extraordinarily limited availability of current advanced protocols for
    the average adult American coupled with the new challenges presented by
    the managed care environment, very few adults are able to benefit from
    the opportunity to receive cutting-edge therapy, even when their lives
    depend on it. Further, unless more substantive funding and a better
    approach is developed to sustain clinical research, the possibilities
    for translating discoveries made in the laboratory into meaningful
    treatments will be eliminated.
        This is the status of current patient-and disease-oriented
    research--the ``good news.'' I have previously mentioned but a few of
    the many discoveries which have been made recently which could permit
    us to identify patients at risk for cancer, to develop specific
    diagnostic and treatment strategies which could radically improve their
    prospects for the cure, and, indeed, to develop rational approaches for
    practicable prevention. Yet if the infrastructure for conducting
    diagnostic and therapeutic trials for even 6 percent of the population
    is under siege, how do we rationally expect these discoveries to be
    translated? Assuming we have a test which can identify a large
    proportion of patients at risk for cancer in a high risk family, we do
    not yet have the mechanisms or the research base needed to more broadly
    apply it. Furthermore, for the patient identified, new approaches must
    be developed so that the risk of cancer can be converted from risk of
    cancer death to probability of cancer cure. This progress will require
    a national clinical research effort more akin to what has worked for
    children than that which exists for adults. Without this type of
    development and careful evaluation, patients who undergo genetic
    testing will be left with a sword of Damocles hanging over their heads.
    The NIH must be given the wherewithal to mount a legitimate effort in
    translational and clinical research. Right now, NCI devotes less than
    10 percent of its budget to this priority. These programs will require
    more than a doubling of the NCI budget to adequately address research
    needs.
        This national effort, if it is to be effective, will also need a
    new generation of physician-scientists trained in scientific
    disciplines of translational and clinical research. Make no doubt about
    it, the research conducted over the last 25 years has led not only to
    dramatic new scientific discoveries, but has also revolutionized the
    way that clinical investigations are conducted. We have accrued
    extraordinary knowledge about how to design, implement and analyze
    clinical studies to make sure that patients are safeguarded and that
    the maximum benefit accrues both to the patient subjects as well as to
    the public at large. However, due to lack of resources, we have not
    kept pace with the development of young investigators trained in this
    scientific discipline. Soon, it will be too late. The proportion of
    trained physicians willing to initiate a career in clinical
    investigations is declining radically. There is little grant support
    for it. Academic centers can no longer provide for it.
        In summary, we believe the nation's efforts in cancer research are
    in grave crisis. We are deeply concerned that the support of research
    requested in the proposed budget is grossly inadequate. At this time of
    national need and exceptional opportunity, research into cancer must
    not be viewed as a ``contracting scientific enterprise.'' The opposite
    is called for. We as scientists and clinicians have often sat back and
    remained silent when activism was required. The reality of cancer,
    however, is too monstrous, too ghastly a reaper of human life in its
    bloom as well as in its old age to be allowed to persist. This crisis
    in national will must be met. The time is now.
        On behalf of the members of the American Association for Cancer
    Research, I would again like to thank the Committee for its continuing
    efforts to provide strong and appropriate support for the biomedical
    research needs of our country and for the opportunity to present our
    concerns at this most promising and yet most critical stage in our
    nation's quest to eradicate cancer.
                                     ______

           Prepared Statement of Matt Emmens, President, Astra Merck
        Thank you, Chairman Specter, for inviting me to submit testimony
    for the record in your fiscal year 1998 bill.
        I want to begin by thanking you and the members of your
    Subcommittee for your leadership in the field of biomedical research.
    This Subcommittee has clearly recognized the importance of this
    investment, and because of your leadership, we are closer to treatments
    and cures for many diseases than ever before. One exciting example of
    the result of investment in research is peptic ulcer disease. As a
    result of a strong investment in medical research, a cure now exists
    for the millions of Americans who suffer from ulcer disease.
        Peptic ulcers affect approximately five million Americans each
    year. It is estimated that 10 percent of the population will develop an
    ulcer during their lifetime. Until recently, doctors believed that
    lifestyle factors such as diet and stress, along with acid and pepsin,
    caused ulcers. Recent research has demonstrated that most ulcers
    develop as a result of infection with a bacteria called Helicobacter
    pylori (H.pylori). Studies show that H.pylori infection in the U.S.
    varies with age, ethnic group, and socioeconomic class. H.pylori is
    most common in older adults, African Americans, Hispanics, and lower
    socioeconomic classes.
        Until recently, ulcers were treated as a chronic disease with an
    unknown cause. Today, because of federally-supported research on the
    bacteria H.pylori, this disease can be cured by the eradication of
    H.pylori, resulting in significant cost savings to patients and to our
    health care system. There are an estimated 500,000 new cases of ulcer
    disease and over 1,000,000 hospitalizations per year. Studies have
    estimated that the direct and indirect costs of ulcer disease to the
    nation total between $8 billion and $10.5 billion annually, most of
    which could be saved through eradicating H.pylori. In a 1995 report to
    the Senate Appropriations Committee, the National Institute of Diabetes
    and Digestive and Kidney Diseases quoted the Archives of Internal
    Medicine study, ``Costs of Duodenal Ulcer Therapy with Antibiotics,''
    by A. Sonneberg and W.F. Townsend, which found that the cost of
    treating H.pylori over 15 years was $900 compared to $11,000-$18,000
    for maintenance therapy and surgery. Put another way, the cost
    effectiveness ratio of curing peptic ulcers through H.pylori
    eradication verses maintenance therapy is 16:1 over the average 15 year
    span of lifetime treatment of peptic ulcers.
        Unfortunately, despite this exciting medical breakthrough, most of
    the American public is unaware of the connection between h.pylori and
    ulcers and the potential for its eradication in as little as two weeks
    through the use of antibiotics and an acid-reducing mechanism. A survey
    conducted in 1995 by the American Digestive Health Foundation showed
    that nearly 90 percent of Americans with digestive disorders are
    totally unaware of H.pylori. Ninety percent of those surveyed still
    believed that stress causes ulcers, and 60 percent thought that poor
    diet was the cause.
        In 1994, NIH convened a Consensus Development Conference which
    concluded that H.pylori causes most ulcers, and that most ulcers can be
    cost-effectively cured by eradicating H.pylori. In a 1995 report to
    Congress, NIH endorsed these findings and stated as one of its
    objectives for future research the enhanced communication between
    physicians and their patients on optimal treatments for H.pylori.
        In fiscal year 1997, Congress asked CDC to initiate a trans-
    department public education campaign to foster more effective
    communication between consumers and heath care providers on H.pylori
    and its link to ulcer disease. I am pleased that CDC has allocated $4
    million in fiscal year 1997 for an H.pylori public education campaign.
    CDC has issued a draft education campaign which has three objectives:
    educate the public about the role of H.pylori in peptic ulcer disease,
    establish a continuing education campaign to educate health care
    providers about the role of H.pylori in peptic ulcer disease, and
    continue research to gather additional information about H.pylori. CDC
    has also convened a meeting with representatives of academia, national
    associations, pharmaceutical companies, and federal agencies to: review
    existing educational campaigns; review remaining gaps in public and
    provider knowledge and how to assess them; discuss the new campaign's
    implementation and evaluation; discuss the research needed to determine
    the appropriate educational messages.
        For fiscal year 1998, an additional $4 million will be necessary to
    execute the full range of communications activities required. As
    Congress well understands from the government's experience in smoking
    cessation, AIDS prevention, childhood immunization, and screening for
    heart disease, breast cancer and many other public health problems,
    breaking through to a level of public conscienceness on the nation's
    health priorities is always a daunting challenge. To put this in
    perspective, it is telling to highlight the cost of a few successful
    public education campaigns led by the NIH: National Cholesterol
    Education Program ($5 million); National High Blood Pressure Education
    Program ($27 million); National Cancer Institute Information Services
    Program ($30 million). Certainly, the potential for improving the
    quality of life of thousands of Americans and of producing substantial
    cost savings to our healthcare system warrants additional funding for
    this important H.pylori public education campaign to ensure that it is
    comprehensive and effective.
        Thank you, Mr. Chairman, for the opportunity to submit testimony on
    this important subject. I look forward to continuing to work with you
    and the members of your Subcommittee to educate the public and
    physicians about H.pylori and its link to ulcer disease.
                                     ______

           Prepared Statement of Robert Wilson, the Wilson Foundation
        Thank you, Chairman Specter, and members of the Subcommittee for
    the opportunity to submit testimony on the need for a continued Federal
    commitment to Neurofibromatosis research and to highlight the exciting
    advances that have been made in recent years as a result of your
    Committee's support for NF.
        I am Robert Wilson, President of the Wilson Foundation, a private
    charitable foundation. My 10 year old son, Michael, suffers from
    Neurofibromatosis. I am here today on behalf of Michael, the 100,000
    other Americans who suffer from NF, as well as the tens of millions of
    Americans who will also benefit from advances in NF research.
        NF, incorrectly but commonly known as elephant man disease,
    involves the uncontrolled growth of tumors along the nervous system
    which can result in terrible disfigurement, deformity, deafness,
    blindness, brain tumors, cancer, and death. It is the most common
    neurological disorder caused by a single gene and affects three times
    as many people as other disorders such as Cystic Fibrosis or Muscular
    Dystrophy. While not all NF patients suffer from the most severe
    symptoms, all live their lives with the uncertainty of knowing whether
    they too will be severely affected because NF is a highly variable and
    progressive disorder.
        With a relatively small investment, NF has become one of the great
    success stories of the current revolution in molecular genetics.
    Researchers have already determined that NF is closely linked to many
    of the most common forms of human cancer, including leukemia, colon
    cancer, and melanoma, because NF like cancer involves tumor suppressor
    genes. Dr. Samuel Broder, former Director of the National Cancer
    Institute, stated that NF was at the ``cutting edge'' of cancer
    research. Accordingly, advances in NF research bolsters hope for a
    treatment not only for NF but also for cancer, brain tumors, and
    learning disabilities which would benefit over 100 million Americans in
    this generation alone.
        This cancer connection was at the heart of a major conference on NF
    held in 1995 at Cold Spring Harbor Laboratory in New York, one of the
    world's leading cancer and neuroscience research laboratories headed by
    Dr. James Watson, the co-discoverer of DNA. The Conference brought
    together basic researchers, clinicians, biotech and pharmaceutical
    companies from the United States, Canada, and Australia specifically to
    find a treatment and a cure for NF.
        The Cold Spring Harbor Conference has been hailed throughout the
    research community as a turning point for NF. After the Conference,
    more than 20 leading NF researchers worked for over one year preparing
    a detailed blueprint for finding a treatment for NF. This document has
    been circulated throughout the research community and NIH, and has been
    well received.
        The future promise of NF research is based on past success. Let me
    highlight the enormous advances in NF research that have occurred since
    1990:
      --The discovery of the NF1 and NF2 genes and gene products;
      --Determining that NF is closely linked to many of the most common
            forms of human cancer, brain tumors, and learning disabilities
            which affect over 100 million Americans;
      --Determining the function of the NF genes and gene products;
      --Developing animal models for NF1 and NF2;
      --Developing a diagnostic blood test and pre-natal testing for NF;
      --Commencing a national trial drug treatment program for NF patients
            which can serve as the infrastructure for future clinical
            trials;
      --Determining the connection between the phenotype/genotype in NF;
            and,
      --Substantially increasing the number of NF researchers.
        In addition, two breakthrough discoveries relating NF to learning
    disabilities have recently occurred. Dr. Alcino Silva, a microbiologist
    at Cold Spring Harbor Laboratory, has completed a study of mice and has
    concluded that a lack of neurofibromin, the protein expressed by the
    normal NF1 gene, may be at the root of learning disabilities. He has
    also discovered that the tumors and learning disabilities manifested in
    NF patients may originate from the same molecular origin. This
    discovery is a significant breakthrough because it could open a new
    path for research on learning disabilities and cancer. In a related
    development, researchers at Cold Spring Harbor Laboratory, in
    conjunction with researchers at Massachusetts General Hospital, have
    cloned the NF1 gene and discovered the NF1 protein neurofibromin in the
    fruitfly. The researchers have identified a new function of the
    neurofibromin which impacts on the pathway related to learning
    disabilities. This is a significant breakthrough because it opens the
    possibilities for new pharmaceutical treatments for NF in addition to
    those already under development related to NF tumor suppressor
    functions.
        After breathtaking discoveries during the past six years, NF now
    stands on the threshold of a treatment. Dr. Michael Wigler of Cold
    Spring Harbor Laboratory and one of the world's leading researchers of
    RAS, a critical protein implicated in both cancer and NF, has stated
    that ``there are enough tangible tools already in place in NF research
    to deliver the knockout blow'' and concluded that ``finding a treatment
    and cure for NF would be the medical equivalent of the Apollo
    Program.'' And Dr. Bruce Korf of Harvard Medical School, has recently
    predicted that clinical trials for therapies for NF are likely to occur
    in the next few years.
        The enormous promise of NF research--and its potential benefits for
    many common cancers, brain tumors and learning disabilities--have
    gained increased recognition from Congress and the National Institutes
    of Health. Last year, your Subcommittee included language in your
    fiscal year 1997 Report that recognized the enormous promise of NIH-
    funded NF research and urged the National Cancer Institute and the
    National Institute of Neurological Disorders and Stroke to pursue an
    aggressive program in basic and clinical research in NF. Over the last
    six years, the NIH has doubled its NF portfolio, from approximately $6
    million to $12 million annually, with the bulk of the research funded
    by NCI and NINDS.
        For Fiscal 1998, we seek this Subcommittee's continued support in
    funding the research essential to finding a treatment and cure for NF.
    The specific areas of opportunity where NF research dollars should be
    focused are:
      --Developing drug treatment therapies for NF1 and NF2;
      --Further determining the function of the NF genes and gene products;
      --Further determining the connection between NF and cancer, tumors
            and learning disabilities;
      --Further development of the NF animal models; and,
      --Increasing the number of NF researchers, clinics and research
            centers.
        These objectives should serve as the basis of a four-part NF
    research agenda for fiscal year 1998. In furtherance of this plan, we
    request that Congress:
      --Increase appropriations for NIH. I recognize the difficult funding
            decisions faced by your Subcommittee in these tight budgetary
            times. However, I encourage you to support NIH's professional
            judgement budget and the recommendation of the Ad Hoc Group for
            Biomedical Research which advocates a 9 percent increase for
            NIH in fiscal year 1998. This increase will enable all
            scientists to capitalize on many of the promising research
            opportunities that exist in basic and clinical research and
            help our nation maintain its world-renowned leadership in
            biomedical research;
      --Increase appropriations for NF research. Given the track record of
            success in NF research with modest funding and the implications
            for finding a treatment and cure for so many other diseases
            affecting over 100 million Americans, research into NF is
            extremely cost effective. We therefore request a substantial
            increase above the current level of spending for NF research;
      --Continue cooperation and coordination between NINDS and NCI through
            targeted NF research programs. The Committee should encourage
            NCI and NINDS to continue to coordinate their efforts in
            expanding their NF research portfolios in fiscal year 1998
            through the use of: requests for applications, as appropriate;
            program announcements; the national cooperative drug discovery
            group program; and small business innovation research grants;
            and,
      --Target funding for the implementation of the clinical research
            initiatives generated at the Cold Springs Harbor Conference. As
            developed by Cold Spring Harbor Laboratory at its NF conference
            in October 1995, NF should become the model for scientist-
            initiated proposals to fund clinical treatment research for
            specific diseases which offer the potential for significant
            advances in broader areas, like tumor suppressor genes. The
            Committee should encourage NIH to explore this new and exciting
            avenue in promoting dramatic advances in select research areas.
        In closing, Mr. Chairman, with only a small investment, dramatic
    advances in NF research have been made with far reaching implications
    for many other diseases. Many of the world's leading NF researchers,
    such as: Dr. Frances Collins, Director of the National Human Genome
    Project; Dr. Bruce Korf of Harvard Medical School; Dr. Vincent Ricardi
    of the NF Institute in Los Angeles; Dr. David Gutmann of Washington
    University School of Medicine; and Dr. Michael Wigler of Cold Spring
    Harbor Laboratory, among others, now believe with an increased
    investment and a research agenda focused on all aspects of the NF
    research portfolio, from basic research in the labs to drug
    development, a treatment and cure for NF can be found by the turn of
    the century. But we need your continued support.
                                     ______

       Prepared Statement of William R. Brody, President, Johns Hopkins
                                   University
        I am pleased, on behalf of the Johns Hopkins University, to submit
    a statement for the Committee's consideration as it evaluates funding
    priorities for fiscal year 1998.
        Although Johns Hopkins is a multi-faceted university offering
    education and research in a broad variety of areas, we probably are
    best known for the high quality of our academic health center. It is
    there that we carry out the mission of an academic health center with a
    strong commitment to patient care, education and research. Academic
    health centers are a unique national resource responsible for
    discovering and translating research progress into clinical practice.
    In fact, the majority of major advances which have impacted human
    health in this century would not have been possible without the
    specific contribution of academic medical centers. Without the
    important role of these centers in bringing together diverse scientists
    to examine complex medical problems and pushing the frontiers of
    science, medicine would remain in dark ages.
        Before we address the tremendous opportunities which exist in
    medical research, we must recognize the leadership of this Committee in
    garnering Congressional support for medical research. We recognize the
    grave fiscal constraints that this Congress is facing. We also
    recognize that the basic research supported through the National
    Institutes of Health serves as the economic engine for science and
    medicine in this country. Therefore, we believe that medical research
    supported by the NIH is a sound investment in our future--for the
    future of our citizens as well as our economy.
        To that end, we support the recent proposals in Congress to double
    the budget of the NIH. Specifically, we support HR 83 and S.R. 15 which
    seek to double the NIH budget over the next five years. This would
    require a 15 percent increase in fiscal year 1998. We are pleased that
    Congress has seen the beneficial contributions of the NIH to our
    citizens and the economy and believes that the NIH should remain a
    priority as we move into the next Century. The exciting opportunities
    in medical research are greater than ever before and to reduce our
    investment now will diminish our capacity to respond to real and
    growing threats to the health and well being of our citizens, such as
    cancer, heart disease, Alzheimer's, and neurological disorders.
    Economic Aspects of Medical Research and Innovation
        We believe that a resource commitment of this level is a wise and
    sound investment. The United States spends less than 2 percent of
    health costs on research to prevent, detect, treat and cure the
    diseases which plague Americans. This is astounding when you look at
    the research and development investment that corporations must make to
    stay competitive in the marketplace. As an example, the pharmaceutical
    industry invests almost 22 percent of its annual U.S. sale revenues to
    research and development. A doubling of the NIH budget is vital in
    charting a course to make the necessary investment in the catastrophic,
    chronic and costly diseases that know no social or economic boundaries.
    Only then will we be able to advance the scientific frontiers and
    realize the full potential of our past medical research investment.
        The Office of Technology Assessment has noted in its most recent
    report that the U.S. has led the world in the commercial development of
    biotechnology because of its strong research base--most notably the
    biological sciences. Biotechnology is not an ``industry,'' rather it is
    a set of biological techniques, developed through decades of research
    in academic medical centers, that are now being applied to research and
    product development in the industrial sector. It is interesting to
    point out that dedicated biotechnology companies are almost exclusively
    a U.S. phenomena. The U.S. Biotechnology and medical device industry
    have not only provided rapid economic growth, they are significant net
    exporters of products to foreign countries.
        Because of its importance to U.S. competitiveness in an
    increasingly global economy, medical research is seen as one of the
    keys to U.S. competitiveness in the years ahead. However, there are
    several signs that our world leadership in science and engineering is
    eroding:
      --Between 1971 and 1991 real growth in U.S. civilian research was
            less than in five of our primary competitors for world markets,
            including Germany and Japan;
      --In 1986, foreign competitors (Japan and Germany) began investing a
            larger percentage of their GNP into research and development
            than did the U.S.;
      --U.S. non-defence R&D is now quite low--1.9 percent of the GNP--as
            compared to important economic rivals Japan (2.8 percent) and
            Germany (2.4 percent); and,
      --Between 1961 and 1980, the U.S. introduced 23.6 percent of all new
            technology products, Japan introduced 10.3 percent. In 1983,
            Japan introduced 38.4 percent of all new biotechnology
            products, while the U.S. only introduced 12.5 percent.
    Human Face of Disease
        The human contributions made by our medical research enterprise are
    enormous. Treatments for people with chronic diseases have stemmed from
    medical research and innovation. People with life threatening and
    chronic diseases look to medical research and innovation for the
    promise and hope of a cure. Medical research and innovation have
    prevailed to improve the quality of life for millions of us, but the
    challenge remains to find answers for millions more who face disease
    and disabilities.
        Unfortunately, every day Americans suffer or die from cancer, heart
    disease, strokes, stomach ulcers, Alzheimer's disease, Parkinson's
    disease, cystic fibrosis, neurodegenerative disorders and HIV
    infection. For millions of Americans, time is running out.
    Comprehensive Support of the Costs of Research
        One important factor in realizing our full research potential is to
    provide state-of-the-art research facilities where novel and cutting
    edge research can be fostered. All research costs--research,
    administrative, plant operations and facilities costs--are real and
    legitimate costs of NIH-supported research. Continued support for the
    full spectrum of costs of research is vital to maintain the stability
    of medical research infrastructure and to enable our research
    enterprise to flourish and compete in the global marketplace.
        We are aware that this Committee has been interested in research
    costs and the federal policies that govern them. The administration and
    management of indirect cost reimbursement policies is regulated
    government-wide by the Office of Management and Budget and implemented
    by the federal agencies. This process has worked well for several
    decades. The basis for regulatory oversight of the costs of research is
    based on the recognition that arbitrary or temporary actions undermine
    the financial stability of the country's research capabilities and are
    detrimental to technology development. Further, it is believed that
    government-wide uniform policies are the best approach. Administrative
    and facilities costs are expenditures that have been made by the
    universities which the federal government has already agreed to
    reimburse through regulatory guidelines and formal agreements entered
    into with universities. Any alteration of these agreements must be very
    carefully considered to assure that any changes do not impact
    negatively on the integrity of our research infrastructure.
        Over the past six years, significant changes have been made in
    federal policies regarding reimbursement for these costs. It has been
    estimated that these changes save over $100 million annually. In
    addition, the Office of Management and Budget is expected to announce
    additional changes in cost accounting standards and revisions to A-21
    Circular within the next several months. These changes will further
    strengthen the regulatory oversight of the costs associated with the
    conduct of research.
        We look forward to continuing to work with this Committee in the
    important issues related to our medical research enterprise. Thank you
    for the opportunity to present a statement for your consideration.
                                     ______

       Prepared Statement of Joseph W. Kemnitz, Ph.D., Interim Director,
                   Wisconsin Regional Primate Research Center
        Chairman Porter and Members of the Subcommittee: I am Dr. Joseph
    Kemnitz, Interim Director of the Wisconsin Regional Primate Research
    Center and Senior Scientist in the Department of Medicine at the
    University of Wisconsin School of Medicine. I am here to represent the
    seven Regional Primate Research Centers which are located at
    distinguished universities in the states of California, Georgia,
    Louisiana, Massachusetts, Oregon, Washington and Wisconsin. They
    receive support as part of the Comparative Medicine Program of the
    National Center for Research Resources of the National Institutes of
    Health (NCRR-NIH). I am proud to have served the Wisconsin Regional
    Primate Research Center for 20 years, and I welcome the opportunity to
    come before this Committee and talk about the accomplishments and
    current needs of the primate centers.
        Congress acted with great wisdom and foresight in 1960 to establish
    the national Primate Center Program by appropriating funds to build the
    seven centers we have today. In the nearly forty years since their
    establishment, it is increasingly clear that this was an excellent
    investment. These centers provide specialized and unique scientific
    capabilities not available through any other program within the
    Department of Health and Human Services. For a variety of reasons,
    including the ever-increasing complexity and sophistication of research
    questions and methodologies, the Primate Center Program is even more
    important today than when the centers were established. Well over 1,000
    investigators depend on the Regional Primate Research Centers to
    conduct research supported by the National Institutes of Health as well
    as other governmental and private-sector sources. These investigators
    are not only those based at the primate centers, but also include
    regional, national and international scientists who rely on resources
    and expertise at primate centers to conduct their research.
        The importance of nonhuman primates to progress in biomedical
    research cannot be overestimated. These animals are the closest
    surrogates for our own species, sharing more than 90 percent of the
    genetic makeup with humans. This close genetic similarity results in
    marked similarities in anatomy, physiology and behavior that make these
    animals outstanding models, in some cases the only appropriate choice,
    for understanding human health and disease processes. Nonhuman primates
    are often the vital link between basic research and human application.
    Examples of significant accomplishments resulting from primate research
    abound in the fields of neuroscience, reproduction and developmental
    biology, and infectious diseases, among others.
        Recent advances at Regional Primate Research Centers include
    increased understanding of the pathobiology of AIDS and the development
    of vaccines for protection against the disease. Indeed, the most
    prevalent model of AIDS, simian immunodeficiency virus, was established
    at Primate Centers. Our Center and others are now also engaged in
    research to prevent the AIDS virus from being transmitted from HIV-
    infected mothers to their babies.
        Other advances include better understanding of fertilization and
    early prenatal development, another example of a research area where
    the nonhuman primate offers unique benefits because of similarities to
    humans and differences from other laboratory species. Nonhuman primate
    research is also leading to enhanced knowledge of the genetic basis of
    disease and immunity, of development of obesity and its complications
    such as diabetes and hypertension, and of specific women's health
    issues such as endometriosis, polycystic ovary syndrome, and of changes
    during and after menopause.
        Very significant advances have also been made in the area of
    primate neuroscience. As Congress recognized in declaring this the
    ``Decade of the Brain'', neuroscience is now a highly productive and
    exciting research frontier, fueled by rapidly developing technologies.
    Primate center research has made significant strides in elucidating the
    neural mechanisms controlling voluntary movement, emotional behavior,
    and higher cognitive brain functions.
        Older people represent the fastest growing segment of our
    population. People are living longer and there is a need to improve the
    quality of life of older individuals. Efforts are underway at our
    Primate Center and elsewhere to uncover the basic processes of aging in
    primates and to develop new approaches to postpone the development of
    age-related infirmities, such as osteoporosis, loss of muscle mass,
    impaired vision and neurological problems. We have promising
    preliminary evidence to suggest that diet can reduce the incidence,
    delay the onset and lessen the severity of some metabolic diseases
    associated with aging. New hypotheses regarding the mechanism of these
    beneficial effects of reduced caloric intake are now being tested.
        In spite of their productivity the infrastructure at the Regional
    Primate Research Centers have had to cope with static base operating
    budgets. At one time the support for primate centers covered operating
    costs and research projects conducted at the centers. Today those base
    grants cover only a portion of the operating expenses and little or
    none of the research costs. The research projects themselves are now
    primarily funded through a rigorous system of peer review at NIH. The
    sum of these competitively awarded grants exceeds the size of the base
    grant by more than five-fold at some centers and requires resources
    exceeding those available in terms of animals, laboratories and support
    functions. We need additional operating funds in order to meet
    expeditiously the operational needs of the biomedical research
    community now.
        The use of primates in research represents less than 1 percent of
    laboratory animal use overall, but the demand for primate research is
    increasing because of the unique insights these animals can provide to
    human health issues. It is noteworthy that nearly half of academic
    primate research is conducted at the Regional Primate Research Centers,
    where there is multidisciplinary focus on questions of basic biological
    and medical interest. Greater numbers of external investigators are
    requesting access to primate center resources for projects that require
    the nonhuman primate model. The increasing concentration of primate
    research at the Primate Centers reflects the need for special
    facilities for these complex animals and special expertise for their
    husbandry, veterinary care and psychological well-being that are
    available at these sites. The centers are cost-effective because of
    their already established expertise and also because of economies of
    scale. It is very important that the primate centers continue to
    provide continuity of research context in which to address new
    questions and challenges as they arise. Life-long care of these animals
    in a laboratory setting has also greatly extended their life-expectancy
    enabling initiatives in the study of aging.
        The centers attempt to maintain self-sustaining colonies of the
    most commonly utilized species (for example, rhesus monkeys), which
    greatly reduces the need for removing animals from their natural
    environments and also provides better research subjects. For example,
    offspring of generations of laboratory-raised monkeys have completely
    known histories and pedigrees, which are essential for better
    understanding of the genetic basis of disease susceptibility.
        The Regional Primate Research Centers are nearly 40 years old and
    some renovation and replacement of facilities is becoming urgent, while
    expanded facilities are also required to catalyze the scientific
    opportunities into the next century. This is especially necessary for
    AIDS research and investigation of other infectious diseases which
    require special biocontainment capability. NCRR obtained construction
    authority from Congress in 1993 for the first time since 1969, and we
    are grateful for this support during the past few years. We are very
    concerned, however, that the President's budget request for next year's
    construction funding to NCRR is only $4M, which is 20 percent of the
    award for last year. We request that every effort be made to restore
    the NCRR budget allocation to at least last year's level and that a
    portion of this be specifically targeted for the Regional Primate
    Research Centers, so that we can maintain state-of-the-art, competitive
    facilities and equipment.
        In summary, the seven Regional Primate Research Centers have made
    substantial contributions in the realm of biomedical research and they
    will continue to do so. In order to accelerate progress, we ask that
    the base operating budgets for the primate centers be increased and
    that additional funding be allocated to renovation and new construction
    at these centers. Mr. Chairman, that concludes my testimony and I would
    be happy to answer any of your questions.
                                     ______

      Prepared Statement of Warren Greenberg, Ph.D., Professor of Health
        Economics and of Health Sciences, Department of Health Services
     Management and Policy, George Washington University; and Chairperson,
             Committee on Lobbying/Legislation, Mended Hearts, Inc.
        My name is Warren Greenberg. I am a professor of health economics
    and of health care sciences at The George Washington University. I am
    married and have a 22-year-old daughter.
        I advocate an increased appropriation for the National Heart, Lung,
    and Blood Institute. I am a victim of heart disease and as a
    beneficiary of the efforts of medical researchers to overcome this
    disease. I might also add that I am a member of Mended Hearts, Inc., a
    support group of 24,000 members throughout the United States who have
    heart disease, and I have been appointed lobbying and legislation
    chairperson of that group--a volunteer position.
        I am 54 years old. I was born with aortic stenosis, a narrowing of
    the heart valve. Throughout my entire life I have lived with heart
    disease, often incredibly severe.
        When I was in my early teens, my physicians did not allow me to
    play high-school inter-mural sports, although I was a fine young
    athlete. At the age of eighteen I was told not to play ball under any
    circumstances. In my early 20s I was told to climb no more than two
    flights of stairs. By my early and mid-thirties I began to climb steps
    more and more slowly, often pausing to rest. I never carried an attache
    case home from work. It was too heavy. I would often balance a large
    book on my hips, rather than carrying it outright, in order to blunt
    the weight. I would walk two or three blocks on a level street to avoid
    going up three or four steps at the end of particular blocks. I could
    barely lift my newborn child; I could not help my wife take in the
    grocery bags.
        On May 7, 1982, at the age of 39, I had open-heart surgery at the
    Cleveland Clinic to replace my diseased valve with the valve of a pig.
    After my six-week recuperative period I was amazed to find that not
    only was I able to walk, but was also able to play tennis, to jog, and
    to exercise. I was able to live a normal life.
        By August 1988, however, my new valve had failed. On August 31, I
    again had cardiac surgery at the Cleveland Clinic to replace the failed
    pig valve with an artificial plastic valve, known as the St. Jude's
    valve. I am again able to live a relatively normal, very productive
    life. And I am deeply thankful for it.
        I still take a blood-thinning medicine, coumadin, which helps
    prevent clots on my new valve. At the same time, because of the
    medicine, I must be cognizant and careful of excessive bleeding. In
    1983 I contracted bacterial endocarditis, an infection of the heart
    valve, from dental surgery which kept me in the hospital for six weeks.
    Whenever, I have dental work, I now get intravenous penicillin to
    protect me against such infections. I realize that my valve, as a
    mechanical device, may fail at any time in the future.
        For nearly fifteen years, thanks to the fruits of medical research,
    I have been able to travel abroad at least once a year, to jog in the
    park, to be a productive author of many scholarly articles and a number
    of books on the health care economy. I have been quoted often on my
    views of the U.S. health care system and have made many television
    appearances. If it were not for the advances in research leading to
    improved techniques in open-heart surgery, I would not have seen my
    fortieth birthday. I would not be able to look forward to a life of
    many rewards and enjoyments.
        As an economist. I observe continually the link between monetary
    resources and the development of innovation and technology. Health care
    research, and cardiovascular research in particular, is no exception. I
    also understand as an economist that there are always competing uses
    for appropriated monies. However, cardiovascular diseases last year
    killed more than 954,000 Americans, more than 155,000 of whom are under
    age 65. Despite advances in medical research, these diseases remain the
    number one killer in the United States and a leading cause of
    disability. From my personal perspective and for those in Mended Hearts
    Inc. and others in the United States who have heart disease or will get
    it in their lifetime, consistent with congressional resolutions for the
    NIH, I ask for a doubling of NHLBI budget by the year 2002. To reach
    this funding goal, I advocate a fiscal year 1998 appropriation of $1.65
    billion for the NHLBI to help reduce further the incidence and degree
    of heart disease.
                                     ______

      Prepared Statement of Patrick Waters, President, Montgomery County,
                               Stroke Club, Inc.
        My name is Patrick Waters and I am a left hemiplegic stroke
    survivor of seven years. I am currently the President of the Montgomery
    County, Maryland Stroke Club. The stroke club is a non-profit
    organization for stroke survivors and their families and numbers about
    400 as well as about 100 professionals.
        Stroke can happen to anyone and stroke is the third leading cause
    of death in the United States and strikes about 500,000 Americans each
    year, killing more than 154,000. Think about this, anyone of your loved
    ones could be struck down by a stroke. It happened to three of our
    United States presidents. I pray that none of you or yours will ever
    know this terrible suffering.
        My stroke occurred in February 1989. I had taken an early
    retirement and I planned to begin a second career, travel and manage my
    investment portfolio. My last two of four children were nearly finished
    in college and everything seemed to be going as planned. My stroke was
    due to an AVM, which as far as I can understand, is a birthmark in the
    brain.
        My stoke was devastating enough, but was compounded by a severe
    fall in the hospital that involved a second hemorrhage. Soon after my
    surgery, I began to have severe burning pain on my entire paralyzed
    side. It was described as post stroke syndrome by some, as
    supersensitivity by others and also as thalamic pain since my AVM was
    in the thalamus. The National Institutes of Health was the only place
    where I was able to get literature on this condition.
        The burning pain I suffer is encountered when I walk on rugs. Shock
    waves travel up my weak side. I feel this pain whenever anyone or
    anything touches my left side. Even my own arm assaults me when it
    rests on my lap or dangles at my side. This pain is extremely
    exhausting. In recent years I have heard from other stroke survivors
    who say they too suffer this pain. At this time we are mostly told to
    learn to live with it.
        The long arduous task of physical therapy so I could walk again was
    lengthy, frustrating and extremely expensive. But, at least I had hope.
    With this pain I feel despair for myself and others because until help
    is found, we suffer.
        Please allocate $93 million for National Institute of Neurological
    Disorders and Stroke-supported stroke research and prevention in fiscal
    year 1998 so those in pain may find relief, and, if not for us, for
    those who may be struck in the years to come. Being associated with a
    stroke club you see many young people whose futures are altered forever
    by stroke and most have no future. Please give them hope through this
    funding.
        As a retired electrical engineer on the space program, I know this
    country is capable of achieving the near impossible. I believe this
    country can and will be the first to prevent strokes and possibly even
    undue the damage they have wreaked.
        Thank you for allowing me to bare my soul.
                                     ______

            Prepared Statement of the American College of Cardiology
                                  introduction
        The American College of Cardiology is a 23,000-member professional
    medical society and educational institution whose mission is to foster
    optimal cardiovascular care and disease prevention through professional
    education, promotion of research, and leadership in the development of
    standards and guidelines and the formulation of health policy.
        The Subcommittee's support for the National Heart, Lung, and Blood
    Institute (NHLBI)--the institute charged with enhancing the prevention,
    diagnosis, and treatment of cardiovascular disease--is vitally
    important to the health of millions of Americans. Each day about 2,600
    people die from cardiovascular disease. This is attributable to the
    fact that more than 57 million Americans--one in five--have some form
    of cardiovascular disease. Beyond better public awareness, reducing the
    number of cardiovascular-related deaths is greatly dependent upon
    research sponsored by the NHLBI.
        The NHLBI has been the impetus for miraculous advances in the
    treatment and prevention of cardiovascular disease. This Subcommittee's
    acknowledgment of the need for consistent funding levels for the
    Institute has made possible many of the major health accomplishments in
    the past decade. As we approach the next century, our nation's
    dedication toward cardiovascular research will not only lead to
    improved technology and effective treatments, but toward an increasing
    knowledge of prevention. Now more than ever it is important that the
    Subcommittee renew its long-standing support for the NHLBI.
                   medical research funding and cost savings
        Throughout the past decade, funding levels for the NHLBI have
    remained consistent. There is concern, however, about future funding
    for the National Institutes of Health (NIH) and NHLBI. Physicians, who
    are operating in an era of tightening health care resources and within
    an ever-changing marketplace, can appreciate the fiscal constraints
    placed on the federal budget. Nevertheless, medical research must be
    viewed as an investment that yields substantial returns such as saved
    lives, increased productivity, and wiser health care expenditures.
        The total economic cost of heart disease in 1997 was $167 billion,
    of which nearly $92 billion were direct costs (costs of providers,
    hospital and nursing home services, medications, and home health). The
    remaining $75 billion were costs associated with lost productivity. In
    1995, Medicare paid $29 billion for the treatment of heart disease.
    That is more than expenditures for arthritis, cancer, kidney and liver
    diseases combined. Yet, the fiscal year 1997 appropriation dedicated to
    heart disease was only $902.8 million.
        Some people will argue that the results of medical research--
    improved technology and innovation--drive up the cost of care. Yet,
    outcomes studies show that modern treatments for heart disease lead to
    decreased costs, fewer hospitalizations and better functional status.
    The recent release of a study by researchers at Duke University shows
    that fewer elderly people were classified as disabled in 1994 (21.3
    percent) than in 1982 (24.9 percent), supporting the view that medical
    research is not only prolonging life, but improving its quality as
    well. The drop in the prevalence of disability among the elderly (8.3
    million in 1982 verses 7.1 million in 1994) is evidence that medical
    research can be cost effective and has the potential to produce
    Medicare and Medicaid savings.
        Reduced rates of cardiovascular disease, and thus cost savings to
    all payers, will not happen without increased prevention efforts and
    better methods for early detection and treatment. We now know, thanks
    to medical research, that heart disease is linked definitively to
    hypertension, high cholesterol, diabetes, physical inactivity, and
    obesity. NHLBI must be given the financial support to take this
    knowledge one step further and find better ways to manage these risk
    factors. The following is a sample of NHLBI-sponsored initiatives that
    are a step in that direction:
      --New findings by NHLBI-funded researchers show that 91 percent of
            congestive heart failure cases were preceded by hypertension.
            Congestive heart failure affects 4.8 million Americans and is
            the leading cause of hospitalization among those 65 years of
            age and older. Therefore, effective hypertensive drug
            breakthroughs are important. The NHLBI is sponsoring clinical
            trials to determine if newer antihypertensive treatments such
            as angiotensin converting enzyme (ACE) inhibitors, are
            effective in reducing the incidence of congestive heart failure
            and nonfatal myocardial infarction in high-risk hypertensive
            patients. Just last week, results of an NHLBI-sponsored
            clinical trial, ``Dietary Approaches to Stop Hypertension,''
            provide new dietary guidelines to help prevent hypertension and
            possibly reduce the need for antihypertensive medication and
            other accompanying long-term costs.
      --The results of a NHLBI-sponsored study, ``Pathobiological
            Determinants of Atherosclerosis in Youth,'' found for the first
            time ever that three risk factors present early in life--high
            density lipoprotein (HDL), low density lipoprotein (LDL), and
            smoking--affect the progression of atherosclerosis at a later
            age. The study shows that risk factors important in adulthood
            are also crucial in childhood, and that healthful habits and
            appropriate pharmacologic interventions should begin as early
            as possible.
        These accomplishments are encouraging. But the simple fact remains
    that cardiovascular disease is still the number one killer of men and
    women in the United States, accounting for 42 percent of all deaths.
    Even with the modernization of heart disease treatments, death due to
    heart disease is not a problem that is likely to disappear any time
    soon especially as the baby boom generation ages. It is for this reason
    that the American College of Cardiology supports increased funding for
    NHLBI in fiscal year 1998.
        The President's fiscal year 1998 budget proposal would fund NHLBI
    at $1.467 billion, a 2.4 percent increase over fiscal year 1997. The
    majority of funds allocated to the NHLBI are committed to projects that
    extend over several years. To maintain these commitments and support
    the increasing sophistication of medical research, the NHLBI requires a
    steady level of funding from year to year. In addition, the NHLBI needs
    an increase in funding to allow it to pursue new and promising
    endeavors of research, to recruit and retain talented investigators,
    and to support investigator-initiated research across the country.
        The College supports the efforts of several members of Congress who
    are advocating an overall NIH funding increase beyond the president's
    proposed 2.6 percent, and we believe the time has come when this
    country should commit to explore a more secure funding source for
    medical research. One potential solution is S. 441, the ``National Fund
    for Health Research Act,'' sponsored by Sens. Tom Harkin, D-IA, and
    Arlen Specter, R-PA. The bipartisan plan would provide the NIH and
    NHLBI with expanded and more stable funding support for health research
    beyond the amount appropriated annually.
                            other areas of research
        Other areas of important research and new initiatives by the NHLBI
    include the following:
        Antihypertensive and Lipid-Lowering Treatment to Prevent Heart
    Attack Trial (ALLTHAT), (initiated in 1993).--This initiative will
    determine whether the combined incidence of coronary heart disease and
    nonfatal myocardial infarction (heart attack) differs when high-risk
    hypertensive patients are treated by diuretic-based treatments verses
    antihypertensive treatments (ACE inhibitor, calcium channel blocker, or
    alpha blocker);
        Coronary Revascularization.--Each year more than 600,000 coronary
    revascularizations (coronary artery bypass, angioplasty, and other
    procedures which restore blood flow to blocked or narrowed arteries)
    are performed in the United States. Although these interventions are
    highly successful, revascularization must be re-examined from the
    following standpoints: cost effectiveness of different types of
    procedures; race-specific effects of various procedures; optimal
    management for patients with evidence of silent ischemia and/or stable
    angina; and support of registries which will allow researchers to
    follow the outcomes of patients who undergo revascularization using new
    devices;
        Clinical Trials in Cardiovascular Disease and Diabetes.--More than
    80 percent of people with diabetes die from some form of heart or blood
    vessel disease. The NHLBI is undertaking activities to explore which
    cardiovascular interventions are best for diabetics. A recent
    Institute-sponsored clinical trial, ``Bypass Angioplasty
    Revascularization Intervention,'' revealed that diabetics with multi-
    vessel coronary heart disease have better outcomes when their
    revascularization is performed through surgical intervention rather
    than through balloon angioplasty. More trials are needed to answer
    questions relating to blood sugar control and its effects on
    cardiovascular outcomes;
        Gene Transfer Principles for Heart, Lung, and Blood Diseases.--New
    research efforts are needed to develop the basic tasks involved in gene
    transfer. In fiscal year 1997, the NHLBI will support a program to
    provide the basic science necessary for gene transfer technology and
    its application to heart, lung and blood diseases. Gene transfer
    technologies hold particular promise for coronary artery disease, as
    researchers hope that it will ultimately result in the ability to
    stimulate the heart to grow blood vessels to carry blood around
    obstructed arteries; and,
        Intervention Studies in Children.--Consistent with its longstanding
    interest in promoting pediatric research, the NHLBI is exploring the
    opportunity to conduct randomized clinical trials (RCTs) on children as
    they pertain to cardiovascular disease. The majority of therapeutics
    developed and used daily for children have never been subjected to RCTs
    to document efficacy and safety.
    Genetics and Molecular Medicine
        The United States is on the edge of entering a new era in genetic
    medicine, which may hold the key to important cardiovascular treatment
    and prevention methods. Just this year the locus for a gene responsible
    for inherited atrial fibrillation, the most common cause of irregular
    heart beats, was discovered by a group of researchers sponsored in part
    by the NHLBI. It is hoped this discovery will lead to new ways to
    diagnose and treat people with atrial fibrillation, a condition which
    can lead to stroke. Other Institute-sponsored projects include
    exploring the relationship between genes and nutrients in the
    identification, treatment, and repair of congenital heart defects, and
    investigating and mapping the genes responsible for hypertension.
    Researchers also hope to discover, through genetic research, why
    patients with hypertension develop varying, if any, pathophysiological
    disease states (heart failure, kidney failure, stroke). Because of the
    complexity of genetic research, a significant commitment of resources
    is needed in this area.
    Education and Prevention
        Education and prevention is fundamental to the Institute's mission.
    Funding for the Institute allows the medical community and the American
    people to capitalize on the advances in the treatment, diagnosis, and
    prevention of heart disease. The Institute's public education
    programs--the National High Blood Pressure Education Program, the
    National Cholesterol Education Program and the National Heart Attack
    Alert Program--provide information directly to patients, families and
    health professionals. In keeping with this theme of rapid dissemination
    and new technology, educational information for both health care
    providers and the public are continuously updated on NHLBI's web site.
    Women and Minorities
        Heart attack is the single largest killer of women. The NHLBI has
    initiated several programs devoted exclusively to women. These programs
    include studies to improve the diagnostic reliability of cardiovascular
    testing in the evaluation of ischemic heart disease, and trials to
    assess hormone replacement therapy and/or antioxidant treatments to
    inhibit and treat atherosclerosis. Several clinical trials are also
    underway examining the use of estrogen to prevent heart disease.
        Black men and women continue to suffer disproportionately from
    cardiovascular disease and many of its related causes, particularly
    hypertension. The NHLBI continues to emphasize the importance of
    including minorities in clinical research and trials. Currently, in two
    NHLBI Specialized Centers of Research, researchers are studying the
    issues surrounding the expression of heart disease in blacks. Another
    program, initiated in 1988 by the NHLBI, is entering its third phase of
    studying cardiovascular disease risk in American Indians.
    Nutrition
        The NHLBI continues to make considerable progress in understanding
    the role of nutrition in cardiovascular disease and has increased its
    involvement in this important area. In 1991, the NHLBI Obesity
    Education Initiative was established to consider the identification,
    evaluation and treatment of obesity in adults, particularly those with
    other risk factors for cardiovascular disease. As mentioned previously,
    the NHLBI has just released new dietary guidelines for lowering blood
    pressure. The Institute continues to conduct clinical trails to assess
    the effectiveness of school and home-based interventions to prevent
    obesity and reduce other cardiovascular disease risks in children.
    There is also a need for clinical trials to determine whether
    micronutrient supplements, such as magnesium, folic acid and other B
    vitamins, can provide cardiovascular benefit.
                                closing remarks
        The United States must maintain its status as the world leader in
    developing new cardiovascular technology and procedures, especially as
    science enters the exploding era of gene therapy for many
    cardiovascular conditions. With continued investment in NHLBI funding,
    researchers will be able to forge ahead into new medical frontiers,
    allowing cardiovascular specialists to perform procedures and prescribe
    treatments that were once unimaginable. That vision is one that
    benefits every segment of the U.S. population and, in fact, all people.
        In summary, the American College of Cardiology would like to stress
    the critical importance of cardiovascular research and the
    contributions of the NHLBI to the advancement of cardiovascular care.
    The College asks that the NHLBI be funded at the maximum this committee
    can provide.
                                     ______

     Prepared Statement of Stanley Herrera, President, Alamo Navajo School
                                  Board, Inc.
        The Alamo Reservation is a ten square mile non-contiguous part of
    the Navajo Reservation located near the small town of Magdalena in
    east-central New Mexico, about 250 miles from the Navajo Nation
    headquarters in Window Rock, Arizona. Due to the Alamo Reservation's
    geographic isolation from the Big Navajo Reservation, the Alamo Navajo
    School Board has become the primary source of nearly all governmental
    services to the 1,800 residents of the Alamo Reservation.
        The Alamo Navajo School Board has, since 1983, successfully
    operated a Head Start Program for Navajo children who live on or near
    the Alamo Reservation. The Board operated the Head Start program as a
    sub-grantee of the Navajo Nation Head Start Program until March of 1997
    when it became a direct grantee under the American Indian Programs
    Branch of the Head Start Bureau. The Alamo Navajo Head Start Program
    enjoys the active involvement of the Local Parent Policy Committee and
    the support of the Alamo Chapter of the Navajo Nation.
        Summary of Request.--Focusing specifically on the fiscal year 1998
    Head Start budget items of highest priority to the Alamo Navajo School
    Board, we respectfully ask the Subcommittee to: support the Alamo
    Navajo School Board's request for $794,000 in funding for a new Head
    Start facility to meet the existing and growing needs of children on
    the Alamo Navajo reservation; and provide the Administration's
    requested funding of $4.3 billion for the Head Start program and,
    within those funds, prioritize funding for construction of new Head
    Start facilities.
        President's fiscal year 1998 Head Start Request.--We appreciate the
    support of Congress and the President for the nation's premier early
    childhood program, Head Start, and ask the Committee to fund the
    program at the President's requested fiscal year 1998 level. This
    funding level will enable Head Start to serve 836,000 low-income
    children and their families through comprehensive education, nutrition,
    health and social services and put the program on track to meeting the
    President's goal of serving one million children by the year 2000. In
    previous years, 3 to 4 percent of Head Start children were served in
    full-day, full-year programs. With welfare reform, the need for full-
    day child care will be increased. The President's Head Start request
    includes $227 million to provide up to 50,000 additional children with
    full-day, full-year Head Start services. An important part of extending
    this program will be providing the necessary funding to expand existing
    facilities and construct new facilities to meet the educational space
    needs for the increased number of children served by the program.
        Proposal of a new Alamo Navajo Head Start Facility.--The Alamo
    Navajo School Board requests that the Committee designate part of the
    Head Start appropriations for the facility needs of the Head Start
    program operations. To emphasize why this is important, we want to
    describe our plans for a new 8,000 square foot, modular construction
    facility at the Alamo Navajo Reservation in which to house our Head
    Start program.
        Our proposal for a new facility meets the requirements for
    construction under the authorization statute: other suitable facilities
    are not available to the tribe; the lack of suitable facilities
    inhibits the operation of the program; and, construction of a new
    facility is more cost effective than purchase of available facilities
    or renovation of the existing facility.
        In order to fund construction of a new Head Start facility, the
    Alamo Navajo School Board has put together a $994,000 funding proposal
    and sought collaborative financing for the project. While efforts to
    seek a $200,000 capital grant from the New Mexico State Legislature
    were unsuccessful, we have been able to secure authorization from the
    New Mexico Finance Authority to finance the project. The Board is
    requesting funding for project costs from the Head Start Bureau through
    one of two funding options; a $794,000 facilities construction grant;
    or, allocation of a down payment and authorization to amortize the
    building costs through monthly lease payments from Alamo's annual Head
    Start budget. Financing for the second option (if approved) would come
    from the New Mexico Finance Authority.
        The Board's recent experience with the construction of a modular
    health clinic on the reservation has proven the cost-effectiveness and
    flexibility of this construction option. The Board has already
    designated a construction site for the Head Start facility and site
    development activities (site, archaeological and environmental surveys
    and soil testing) have been completed. The proposed site is
    conveniently located near both the Alamo Navajo Community School and
    Adult Education Center, and the Alamo Health Center and would serve the
    Alamo Navajo community well.
        Additional information detailing the background on the limitations
    imposed by the current facility in meeting existing program needs, the
    structural problems of our current facility, and the unmet demands of a
    growing population on the Alamo Navajo Head Start program follows.
        Need for a larger Alamo Navajo Head Start facility.--Space
    limitations at the Alamo Navajo Head Start facility have prevented our
    Board from serving all of the Head Start-eligible children in our area
    since the inception of our program, and from expanding our program to
    provide full-day, full-year service to the Head Start children we
    serve. Our current facility, a two room school built in 1972 (which
    formerly served as a BIA day school) limits the number of children we
    may serve to a maximum of 35 children at one time. Since the program
    began in 1983, we have served the maximum number of children that could
    physically be accommodated in our facility, and we have still had a
    waiting list of 10 to 12 children each year; and we have had to limit
    the children served to four years olds.
        In 1988, in an effort to serve more children, the Alamo Navajo
    program applied and received expansion funds to serve 55 children. In
    order to serve the added children, however, we had to institute double
    shifts. Some children attend morning sessions, others the afternoon
    session. While this arrangement has not been totally satisfactory, it
    is a compromise that the Board reached in an effort to serve as many
    children as possible given our space limitations.
        Growing population and unmet need.--Alamo's Head Start program has
    never been able to accommodate three year olds, even though they are
    eligible for services. Nor has Alamo been able to serve children under
    the age of 3 who are eligible for Early Head Start. Nationwide, five
    percent of the Head Start budget is devoted to providing service to
    infants, toddlers, and pregnant women in the Early Head Start program.
        With each passing year in our existing facility, the Alamo Head
    Start program serves a smaller percentage of those reservation children
    eligible for the Head Start program. An indicator of the growing
    reservation population is the number of births each year. In 1986,
    there were 35 births. The number of births grew to 52 births in 1995.
    In 1996, another 43 children were born. We can anticipate that based on
    the 1995 and 1996 birth rates, we will have approximately 95 Head
    Start-eligible children in the near future. Of these 95 children,
    current program funding levels would allow us to serve 55 children or
    58 percent of those 3- and 4-year old children eligible for the Head
    Start program.
        Structural and programmatic problems with existing facility.--
    Alamo's current Head Start facility has reached its expected life cycle
    of 25 years and warrants replacement. Settling of the foundation has
    produced large cracks in both the exterior block walls and throughout
    areas of the floors. The poor structural condition of the building has
    been documented by the IHS Office of Environmental Health in its annual
    health and safety survey. In addition, the facility has never been able
    to meet the real needs of the program--bathroom equipment is not child-
    sized, and the kitchen is too small to allow preparation of meals in
    the quantities necessary.
        There are no alternative facilities to house the Head Start program
    and renovation or expansion of the current facilities is not a cost-
    effective option. The combination of the facility age, functional
    deficiencies and poor building performance make any attempt to renovate
    or expand the facility an ill-advised one that would not be cost-
    effective.
    Summary
        The Alamo Navajo School Board respectfully asks the Committee for
    its commitment to making new construction funding within the Head Start
    budget a priority at the national level and specifically requests
    funding of $794,000 to construct a new, and much-needed Head Start
    facility on the Alamo Navajo Reservation.
        We appreciate the opportunity to express our views on the fiscal
    year 1998 Head Start budget and thank the Committee for its
    consideration of our request for a new Head Start facility. We would be
    happy to provide any additional information concerning our testimony to
    the Committee.
                                     ______

            Prepared Statement of the American Academy of Pediatrics
        On behalf of the Academy and the endorsing organizations, the
    Society for Adolescent Medicine and the Ambulatory Pediatric
    Association, we would like to submit this statement for the record.
        Fortunately, most infants are born healthy and continue to grow and
    develop if they have access to and receive basic health care services.
    Unfortunately, there are still far too many that suffer needlessly from
    disease, injury, abuse, or a host of societal problems. Our task as
    pediatricians is to promote preventive interventions and to diagnose,
    treat and manage acute and chronic problems of children and
    adolescents. Your task is to provide the funds to sustain vital federal
    programs that underpin and complement these efforts. As pediatricians
    we recognize the integral tie between basic research and the care we
    provide; we see the impact of poverty and violence on the health of our
    children and adolescents; and we know that the future of our workforce
    depends on the decisions we make today. We ask that you recognize the
    correlation among preventive and chronic health services, research, and
    the training of new health professionals and to appropriate the
    necessary funds to the extent possible.
        A chart at the end of this statement will offer funding
    recommendations for many programs, but we would like to focus on a few.
    Preventive Health Care:
        Childhood Immunization Program.--The CDC's childhood immunization
    program is the cornerstone of preventive health care for children
    served in the public sector and for uninsured children. Tremendous
    strides in establishing effective immunization programs have been made
    over the past few years. In addition to the cost-effectiveness of
    vaccines, the number of reported cases of vaccine preventable diseases
    are at or near all time lows and immunization levels of two-year old
    children are the highest ever recorded. We attribute this, in part, to
    the Vaccines for Children (VFC) Program and encourage Congress to
    maintain its commitment to ensuring its viability. The VFC program
    combines the efforts of public and private providers to accomplish and
    sustain vaccine coverage goals for both today's and tomorrow's
    vaccines. It removes vaccine cost as a barrier to immunization for some
    and reinforces the concept of a ``medical home.'' To date, its
    successful implementation has resulted in the enrollment of
    approximately 37,000 public and private provider sites. However,
    despite this good news, the most recent National Immunization Survey
    reports that more than 1 million children in America are under-
    immunized. Continued investment in CDC efforts to assist states in
    developing immunization information systems will serve to sustain high
    immunization levels by reminding parents when immunizations are due/
    overdue. It also help providers know the immunization status of the
    children they serve. Also, in order to most effectively access children
    at highest risk for under-immunization, the Academy continues to
    support CDC's efforts to collaborate closely with the WIC program.
    Immunizations are an important investment in our children. Our request
    for funding includes support for the key strategies mentioned above,
    which when implemented locally, are critical to raising immunization
    coverage levels among our nation's children. In fiscal year 1998 the
    Academy and the endorsing organizations recommend at least $528 million
    for CDC's Childhood Immunization program. The Academy is cognizant that
    the Administration's fiscal year 1998 budget proposal for immunizations
    is predicated upon a reduction in the current vaccine excise tax, a
    change that we support. However, we urge you to ensure that the funding
    for the Childhood Immunization program is not compromised if there is
    no change in the vaccine excise tax law this year.
        Maternal and Child Health Service Block Grant--The MCH Block Grant
    is a ``block grant'' that works. Currently, the MCH Block Grant
    provides preventive and primary care services to 17 million women and
    children, including 3 million infants, 8.3 million children and
    adolescents, 900,000 children with special health care needs as well as
    preventive services to approximately 4.8 million women--including one-
    third of all pregnant women in the U.S. Authorized under Title V of the
    Social Security Act, the MCH Block Grant is a federal and state
    partnership that exemplifies key elements in any successful block
    grant--it is logically organized around similar programs and expertise,
    emphasizes preventive health, targets similar populations and problems
    and utilizes similar public and private provider networks. It is the
    crucial framework upon which States have built and maintained their
    systems of care for children and women. It is the ``glue'' that brings
    together multiple services and agencies for children and adolescents by
    coordinating, integrating and filling gaps. An important component of
    the MCH Block grant is that it addresses both the physical and mental
    health needs of adolescents. The Office of Adolescent Health supports
    initiatives such as health care programs for incarcerated youth, health
    care services for minority group adolescents, and violence and suicide
    prevention. The MCH Block Grant includes an important set-aside of 15
    percent to support the Special Projects of Regional and National
    Significance (SPRANS) to improve maternal and child health and promote
    more effective delivery systems. We support the funding of the MCH
    Block Grant program at its full authorization of $705 million--a modest
    3.5 percent increase which will help to preserve and improve crucial
    public health services for children and mothers including improving the
    health of low and very low birthweight babies.
        Folic Acid to Prevent Birth Defects--Each year 150,000 children are
    born with serious birth defects causing one out of every five infant
    deaths. These birth defects are also the leading cause of disabling
    conditions in children, which cost families and our government billions
    of dollars each year. Vitamin supplements containing folic acid have
    been proven to prevent common and disabling birth defects, such as
    spina bifida and anencephaly. Currently only 25 percent of women of
    reproductive age consume sufficient folic acid every day. If American
    women of childbearing age consumed an adequate daily supply of folic
    acid, 2000-3000 cases of birth defects could be prevented each year,
    saving nearly $245 million. By implementing a national multimedia
    campaign and assisting states and private partners with educational
    programs, the CDC hopes to increase the consumption of folic acid in
    women of reproductive age, thereby doubling the number of women who
    consume a sufficient quantity to 50 percent. We recommend $20 million
    for the CDC folic acid supplement initiative.
        Emergency Medical Services for Children--Although issued several
    years ago, a 1993 Institute of Medicine report describing the serious
    deficiencies in emergency medical services for children (EMSC) is still
    very relevant. There continues to be significant problems in emergency
    services for children; for example, many ambulance services and
    hospital emergency departments do not even have child-sized equipment,
    such as, oxygen masks, IV-tubes, and neck braces, needed to treat
    critically ill and injured children. Many emergency medical personnel
    need additional training to adequately treat children, whose medical
    needs are very different than those of adults. (Children have more
    serious breathing problems, are less tolerant of blood loss, are more
    vulnerable to head injuries, have different time requirements for
    procedures and transport, and require special splints, airway devices,
    drugs and dosages.)
        The EMSC program has saved lives. Just last month in Massachusetts,
    18 children at a local community center dance overdosed on illegally
    obtained prescription muscle relaxants. Many of the children were in
    immediate danger of respiratory arrest and the treatment provided by
    the Emergency Medical providers on the scene saved their lives. These
    providers had received special training in pediatric resuscitation,
    training implemented State-wide as part of the EMSC grant program.
        To date, approximately 48 states have received some form of EMSC
    funding for systems development and training. Mississippi and Delaware
    have not yet received a basic EMSC grant. Grantees have developed
    training and research programs which other states and localities have
    replicated, increasing the cost-effectiveness of federal dollars.
    Currently a study is being conducted in Los Angeles and Orange County,
    California to evaluate the outcome of pre-hospital pediatric airway
    management. Several thousand EMTs and paramedics are being trained in
    both intubation and bag mask ventilation. The study will then evaluate
    how the children respond depending on which type of treatment they
    received. This study will have significant implications for the
    training and practice of EMTs and paramedics throughout the country.
        We recommend funding this program at $15 million, which will enable
    the program to continue to assist all states to ensure that children
    have the best possible emergency care; to continue to develop a new
    services research focus; to expand efforts to integrate EMSC into our
    health care system; and to more fully incorporate the concerns of
    family members into the delivery of emergency medical services.
        CDC Injury Prevention--Injury is the leading cause of death among
    children ages one through nineteen and all Americans ages one through
    forty-four, and is a major cause of long-term disability for both
    children and adults. Injury is costly on multiple levels--in the
    emotional toll it takes on its victims and on their families; in direct
    medical expenses (acute and chronic); and in long-term economic costs
    due to the years of potential life and productivity lost (especially
    with respect to children). Therefore, efforts to reduce the incidence
    and severity of injury are extremely cost-effective, and the National
    Center for Injury Prevention and Control (NCIPC) fulfills a unique
    function in this undertaking. The NCIPC works closely with other
    federal agencies, national, state, and local organizations, state and
    local health departments, and research institutions in its study of
    home and recreational injuries and violence prevention. For example, in
    several states, including Texas and California, CDC is working to
    evaluate school and community based violence prevention programs
    including mentoring, peer mediation, public information campaigns, and
    conflict resolution education. In Oklahoma, Maryland, and Arkansas, CDC
    is funding projects to promote the use of smoke detectors and reduce
    residential fires. In New York and California projects are funded to
    promote the use of bicycle helmets to reduce related head injuries to
    children. In some of these areas, projects are sponsored in
    collaboration with the Indian Health Service for the establishment of
    injury prevention programs in Native American communities. Deaths due
    to unintentional injuries are twice the rate for Native American
    children than for children of all other races. We recommend that the
    CDC injury prevention program be funded at $65 million.
        We also support the Coalition for Health Funding's overall
    recommendation for the U.S. Public Health Service of $26.6 billion.
    Pediatric Research:
        National Institutes of Health--Pediatric research today is not only
    exciting, but rapidly changing. Pediatric research covers the entire
    spectrum of research--basic, clinical, applied, and health services--
    and is supported substantially by the federal government through the
    NIH. Research in prevention of premature births and treatment of its
    medical consequences has continued to reduce infant mortality. For
    example, research conducted at NICHD on Sudden Infant Death Syndrome
    (SIDS) has clearly shown a relationship between infant sleep position
    and SIDS. The NICHD in partnership with the Academy and other national
    organizations, has launched a national public education ``Back to
    Sleep'' campaign to advise parents, caregivers, and health
    professionals to place babies preferably on their back or side to
    sleep. Consequently, whereas 80 percent of babies were sleeping on
    their stomach four years ago, only 25 percent are today. More
    importantly, SIDS deaths have fallen by more than 30 percent in the
    last three years. Consider another important example, the development
    of surfactant, which can be administered into the lungs of premature
    infants, has resulted in fewer deaths of infants from Respiratory
    Distress Syndrome (RDS) and has saved an estimated $90 million a year
    in hospital costs.
        We join with the Ad Hoc Group for Medical Research Funding in
    recommending a 9 percent increase for NIH consistent with the
    collective recommendations of agency personnel as well as national
    advocacy groups within the Ad Hoc Group. We also join the Friends on
    NICHD in supporting $690 million for the National Institute of Child
    Health and Human Development. In order to increase pediatric biomedical
    and behavioral research within NIH, we recommend $20 million for the
    Pediatric Research Initiative. We believe that these requests represent
    the best and most reliable estimate of the level of funding needed to
    sustain the high standard of scientific achievement embodied by the
    NIH.
        Agency for Health Care Policy and Research--The AHCPR is the
    primary federal agency charged with developing clinically-based, policy
    relevant information for use in improving the health care system,
    providing leadership in health services research and providing training
    for new health services researchers, such as pediatricians. It uniquely
    serves the interest of both health care consumers and providers.
    Important outcomes research supported by AHCPR have shown that
    improving quality of care can save taxpayers hundreds of millions of
    dollars per year. For example, universal implementation of AHCPR's
    guideline on the treatment of otitis media with effusion, a common
    condition of the middle ear in young children, could cut the total cost
    of care in half and annually save over $700 million. In addition,
    funding from AHCPR has supported the management of acute asthma in
    pediatric practices and the assessment of fevers in very young infants.
    In the latter study, the Academy is collecting data on how
    pediatricians assess febrile infants less than 3 months of age. One
    product of the study will be a revised guideline for diagnostic work-up
    for infants with fever. It is anticipated that such a guideline will
    make it possible to eliminate at least 10 percent of the
    hospitalizations for observation and diagnosis of these infants that
    currently occur. Such a result would save $36 million in current
    hospital costs. We recommend funding of $160 million for AHCPR in
    fiscal year 1998.
    Training:
        Health Professions Training.--Title VII of the Public Health
    Service Act, Primary Care Training Grants for General Internal Medicine
    and General Pediatrics, remains a small but vital incentive program for
    the generalist training of pediatricians. These grants provide support
    for a large number of residents to receive intensive primary care
    training in diverse ambulatory settings--this is the only federal
    support targeted to training primary care practitioners. Faced with
    increases in the incidence of AIDS, substance abuse, adolescent
    pregnancy and other health concerns, pediatricians of the future will
    be expected to manage both acute and chronic health problems, care for
    children with disabling conditions, and provide counseling for problems
    that are psychosocial or behavioral in nature. Given the complex needs
    of their patients, pediatricians will also be called upon to utilize
    community resources and to collaborate with other health care
    providers. Title VII grants in pediatrics have supported training in a
    variety of community and non-hospital based settings such as juvenile
    detention centers, homeless shelters, child nutrition programs, child
    care centers and community health centers.
        We are extremely concerned that the Administration's fiscal year
    1998 budget request, which reduces funding for these programs by 55
    percent, will seriously jeopardize the future training, supply and
    distribution of primary care providers in this country. We are very
    grateful for the support this committee has demonstrated in the current
    fiscal year for health professions training and we recommend fiscal
    year 1998 funding of $25 million for General Internal Medicine/General
    Pediatrics and join with the Health Professions and Nursing Education
    Coalition in supporting, a modest increase of $302 million in total
    funding for Title VII and Title VIII, which is last year's level plus
    medical inflation.
        The National Health Service Corps is a key component of any effort
    to remove barriers to health care and to ensure an adequate
    distribution of health care providers across the country. The
    scholarship and loan repayment programs are another integral part of
    national efforts to increase opportunities for minorities to become
    health professionals. We support funding of $125 million.
    Substance Abuse Prevention:
        Adolescents continue to use illegal drugs at alarming rates--40
    percent of high school seniors interviewed in the annual Monitoring the
    Future Survey said they had used illegal drugs in the past year; half
    indicated that they had tried drugs sometime in their lives. The
    Substance Abuse and Mental Health Services Administration (SAMHSA),
    through its Center for Substance Abuse Prevention (CSAP) supports
    prevention programs for high-risk youth which involves early
    intervention targeted to millions of vulnerable children in school and
    neighborhoods. The Academy strongly supports the Administration's Youth
    Substance Abuse Prevention Initiative which includes funding to develop
    State-wide prevention plans that work; to raise public awareness and
    counter pro-drug messages through a national media campaign; and to
    expand the National Household Survey on Drug Abuse to increase
    accountability through data system development. We support funding of
    $1.8 billion for the Substance Abuse Prevention and Treatment Programs
    at the Substance Abuse and Mental Health Services Administration.
    Tobacco:
        The American Academy of Pediatrics has fought for decades to
    prevent the use of tobacco products by children and adolescents. This
    is a silent and deadly plague. Each day 3,000 children nationally begin
    to use tobacco. Of those people who will ever smoke, ninety percent
    begin before age 19. Young smokers suffer from respiratory problems,
    asthma, chronic cough and phlegm production. Among teens who are
    regular smokers, one in three will die from smoking. And tobacco-
    related illnesses claim the lives of over 400,000 Americans each year.
    These facts alone confirm that tobacco use truly is a ``pediatric
    disease'' that is completely preventable.
        The Academy endorses the Administration's efforts on behalf of
    children to reduce access to tobacco products by children and
    adolescents. We recommend $36 million for CDC's Office on Smoking and
    Health and $25 million for the tobacco prevention and cessation program
    at the National Cancer Institute (ASSIST). We urge Congress to avoid
    any legislative action that could weaken or delay the FDA's efforts to
    reduce tobacco use by children and adolescents.
        In summary, the following list highlights programs, along with
    funding recommendations, of importance to children. The Academy joins
    with its many friends in other organizations and coalitions in
    presenting these recommendations.

    Recommendations for fiscal year 1998

    Department of Health and Human Services:
        Centers for Disease Control and Prevention..........  $3,000,000,000
            Childhood Immunization Funding..................     528,000,000
            Injury Control..................................      65,000,000
            Lead Poisoning..................................      50,000,000
            Office on Smoking and Health....................      36,000,000
            Folic Acid Supplement Program...................      20,000,000
        Health Resources and Services Administration........   3,734,000,000
            Ryan White (total)..............................   1,390,200,000
            Ryan White Pediatric Demos......................      61,000,000
            EMSC............................................      15,000,000
             Family Planning (Title X)......................     250,000,000
            MCH Block Grant.................................     705,000,000
            National Health Service Corps...................     125,000,000
            Health Professions Training (Total).............     302,000,000
            General I.M/Pediatrics (Title VII)..............      25,000,000
            Consolidated Health Centers.....................     882,000,000
        Agency for Health Care Policy and Research..........     160,000,000
        National Institutes of Health.......................  13,800,000,000
            NICHD (Child Health)............................     690,000,000
            NIEHS (Environmental Health)....................     336,000,000
             NCI--Assist Program............................      25,000,000
            Pediatric Research Initiative...................      20,000,000
        Administration for Children and Families:
            Child Abuse Prevention and Treatment............     100,000,000
            Head Start......................................   4,300,000,000
            Child Care and Development block grant..........   1,000,000,000
        Substance Abuse and Mental Health Services
          Administration:
            Children's Mental Health Services...............      80,000,000
            Substance Abuse Prevention and Treatment........   1,800,000,000
        Indian Health Service...............................   2,400,000,000
    Department of Education:
        IDEA part B.........................................   4,607,500,000
        IDEA part H.........................................     400,000,000
        IDEA section 619....................................     776,130,000
                                     ______

    Prepared Statement of Kristin Thorson, President, Fibromyalgia Network;
            and President American Fibromyalgia Syndrome Association
        ``Most of the pain experienced by FMS patients has a physiological
    or biochemical explanation. It is not the patient's responsibility to
    change his or her disease into something that we know more about.
    Rather, it is our task as researchers to better understand the problems
    that exist.''--I. Jon Russell, M.D., Ph.D., Professor of Medicine,
    UTHSC--San Antonio Editor, Journal of Musculoskeletal Pain.
        ``Uncovering two or three new revelations about FMS could make a
    substantial difference in the direction of research. There are few
    other medical conditions to research that could have such a significant
    impact on the treatment of a syndrome and the quality of life of those
    who suffer with it.''--Daniel J. Clauw, M.D., Professor of Medicine,
    Georgetown University.
        Goals for fiscal year 1998: Publish a collaborative NIH PA or RFA
    for pain research related to FMS and overlapping pain syndromes. The
    emphasis should be on clinical research that focuses on: understanding
    the central nervous system pain processing changes that occur in
    chronic pain syndromes, identifying neurotransmitters or pain receptors
    that have potential therapeutic significance, searching for diagnostic
    markers that are essential for the testing of therapeutic
    interventions, and developing novel, non-addictive, pain-relieving
    drugs for FMS and related chronic pain syndromes. Involvement of the
    NIH Pain Research Consortium is strongly urged.
    Introduction
        Mr. Chairman and Members of the Subcommittee, I wish to thank you
    for supporting language pertaining to fibromyalgia syndrome (FMS),
    chronic fatigue syndrome (CFS) and related pain disorders for the past
    few years. Last year you encouraged both the National Institute of
    Arthritis, Musculoskeletal and Skin Diseases (NIAMS) and the National
    Institute for Allergy and Infectious Diseases (NIAID) to step up their
    funding on FMS and CFS, respectively. You also urged the Office of
    Research on Women's Health to develop a policy for addressing the
    research needs for FMS, CFS and other overlapping pain syndromes. A
    collaborative Institute approach at NIH will be crucial to furthering
    our understanding of the body-wide, multi-system nature of these
    disorders.
        The research on FMS and CFS is still in its infancy and objective
    laboratory markers that could aid physicians in supporting these
    diagnoses are not available. Although a tender point exam is used by
    some doctors who are skilled in this area, for the most part, the
    diagnoses of both FMS and CFS are often made based on a person's
    symptoms. Given that the symptom checklist for both conditions overlap
    by 70 percent, many researchers view these disorders as being
    indistinguishable or, at the least, in the same family of syndromes.
    The Two Most Common Symptoms: Pain and Fatigue
        Pain: ``I invite you to recall the last time that you experienced
    severe pain. What else besides pain occupied your attention? * * * For
    most of us, it was precious little else, but the desire to be rid of
    the pain.''--Peter Fagen, Ph.D., Professor of Medicine, Johns Hopkins
    University.
        Body-wide pain is the hallmark of FMS. A large percentage of
    patients will have other symptoms that add to their discomfort, such as
    headaches, irritable bowel and bladder, and jaw pain (TMJ dysfunction).
    Looking at the 1994 CDC criteria for CFS, five of the eight symptoms
    (after fatigue) relate to pain. These include muscle pain, multi-joint
    pain, headaches, tender lymph nodes, and sore throat.
        Fatigue: ``When you ask CFS patients about their fatiguing
    symptoms, they say, `I'm tired.' Unfortunately, `tired' is an ambiguous
    word in the English language. It can mean a lot of things, such as sad,
    bored, unmotivated, et cetera. These people are physically and mentally
    exhausted! And, if you pose the same question to patients with FMS,
    they will respond with the same answer.''--Harvey Moldofsky, M.D.,
    Professor of Psychiatry, University of Toronto Director, The
    Chronobiology and Sleep Disorders Clinic.
        Expounding further on the issue of fatigue, two other related
    problems such as sleep disorder and memory/concentration difficulties,
    have been documented by researchers as common occurrences in both FMS
    and CFS.
        Conclusion: The invisible yet life impacting nature of the above
    symptoms reinforce the need for additional research in these areas.
    Recently, a PA and an RFA have been published to further explore the
    physiology of fatigue, but the problem of chronic pain has thus far
    been omitted from the NIH research funding agenda.
    Looking ``Normal'' but Feeling Awful
        Everyone knows what it is like to be on the front end of the
    initial ravages of a rapidly encroaching and merciless flu bug. The
    situation is similar to what FMS and CFS patients face on a daily
    basis. There are no routine lab tests to identify the cause of the
    patient's illness or to validate how miserable the person feels. Only a
    handful of medications have been shown in drug trials to be of some
    benefit, but their effectiveness in alleviating FMS and CFS symptoms is
    about as good as aspirin is when a cell-destroying virus is storming
    the body. Then there is the issue of appearance versus reality.
    Patients with FMS, CFS and those with the initial onset of a flu bug
    look normal, but they feel awful. With the flu, one can predict a
    return to health within days, but people with FMS and CFS can't simply
    ride out the storm.
        ``When you follow patients with fibromyalgia over time, you find
    changes in pain intensity and changes in severity of symptoms. However,
    even after a ten-year period, the majority of patients continue to have
    pain and other symptoms,'' said Laurence Bradley, Ph.D., Professor of
    Medicine at the University of Alabama at Birmingham. Dr. Bradley
    chaired the chronic pain section of the July 1996 NIAMS workshop on
    FMS, and the persistence of symptoms beyond the ten and fifteen year
    marks has been widely published in the medical journals.
        Just because standard lab tests are unrevealing for FMS and CFS, it
    doesn't mean that there are no relevant abnormalities. Using single
    photon emission computed tomographic (SPECT) imaging, Dr. Bradley has
    found a significantly reduced blood flow in two of the pain processing
    structures in the brains of patients with FMS. ``This indicates that
    the functional activity of these structures has been reduced,'' says
    Bradley. ``Similar changes in functional brain activity also have been
    documented in chronic pain syndromes associated with nerve injuries and
    metastatic cancers.'' SPECT imaging abnormalities in CFS patients have
    been found as well and need to be correlated with Dr. Bradley's work.
        Other important research findings that are not part of routine
    testing include: a threefold increase in spinal fluid substance P
    levels (believed to be an objective indicator of pain), a fourfold
    increase in spinal fluid nerve growth factor which stimulates substance
    P production, low growth hormone production, dysregulation of cortisol
    output from the adrenal glands, sleep disturbances, and
    electroencephalogram alterations.
        So while FMS and CFS patients look normal, investigators have found
    many relevant laboratory abnormalities. Unfortunately, none of the
    findings to date can be used as an objective and universally accepted
    lab marker for diagnosing these syndromes or documenting illness
    severity.
        This situation of looking healthy and not yet having a diagnostic
    marker contributes to the difficulties that patients face:
      --The symptoms become trivialized by family members, friends,
            employers, treating physicians, and the media.
      --A prompt, correct diagnosis is rarely provided.
      --Therapy options are limited when doctors can't find abnormalities
            to treat.
      --Patients become the prime target of cost-conscious health insurance
            companies who clamor: If you can't prove your symptoms exist by
            standard tests, we won't cover them.
      --The pharmaceutical industry shows less interest in developing new
            drugs than it might if a diagnostic marker were readily
            available.
        The bottom line: Without a universally accepted lab marker, more
    FMS and CFS patients will fall through the medical system cracks and
    become disabled. This shifts the cost burden of these conditions from
    employers and insurance companies, to the federal government. It also
    cuts into tax dollars even though patients would much prefer effective
    therapies over unemployment and disability.
    NIH Progress Update
        NIAMS convened a scientific workshop on FMS in July 1996 to cover
    three major topics in FMS/CFS research: chronic pain, neuro-hormonal
    abnormalities and sleep. Later in 1996 both a PA on CFS and an RFA on
    sleep were published, with NIAID cosponsoring the PA and NIAMS
    cosponsoring both research announcements. Both Institutes are to be
    commended for taking positive steps toward soliciting researchers to
    better elucidate the neuro-hormonal basis for fatigue and sleep
    disorders in CFS and FMS patients. However, the issue of pain was left
    out of the funding equation for fiscal year 1997.
        Many useful avenues for researching chronic pain states, such as
    FMS, were provided at the NIAMS scientific workshop. These areas should
    be avidly pursued in order to better understand the physiological
    mechanisms involved in FMS and related chronic pain syndromes.
    Benefits of FMS and Related Pain Syndrome Research
        ``Our standard therapies for FMS/CFS work only in a minority of
    patients. They only help partially and improve some symptoms but not
    others.''--Stephen Campbell, M.D., Professor of Medicine, Oregon Health
    Sciences Univsity.
        According to pain researcher at the University of Arizona, John
    Leslie, M.D., ``In 1996 the dollars spent by the private sector on
    health-related research was twice that of the amount awarded annually
    by NIH.'' The major player in the private sector biomedical research is
    the pharmaceutical industry. So far, drug companies haven't had much
    interest in sponsoring research studies on FMS/CFS, but this could
    change in years to come if we had a better biochemical understanding of
    these illnesses and reliable markers of disease severity (as well as a
    good diagnostic marker for screening drug-trial participants).
        The prevalence of FMS is well-documented as being 2 percent of the
    general population so it affects roughly five million Americans. The
    number of people battling FMS and its related chronic pain syndromes,
    however, is believed to be well above 20 million. A multi-center
    disability study on FMS alone indicates that the direct costs of FMS to
    the U.S. economy is close to $16 billion per year. As stated by Dr.
    Daniel Clauw at the beginning of this testimony, even a modest
    improvement in FMS therapies for patients could lead to a significant
    reduction in this condition's staggering economic burden.
        During the July 1996 NIAMS workshop on FMS, many suggestions were
    provided as a road map for future research directions on this syndrome.
    In particular, the central nervous system and its pain processing
    centers were highlighted as fruitful areas of investigation, especially
    since the most pronounced and potentially disabling symptom of FMS is
    pain.
        It is now recognized that central nervous system changes occur in
    patients with chronic pain such as FMS due to a process called
    neuroplasticity.
        ``Neuroplasticity can lead to a spreading of localized pain to
    involve the whole body. The stress engendered by this persistent pain
    causes many important feedback loops, such as depression, anxiety,
    hormonal changes, sleep loss, behavioral changes, a reduction in
    exercise and activities, and other lifestyle changes. When you look at
    our current treatment of FMS, most of what we are doing is trying to
    reduce the negative impact of these feedback loops (i.e., help patients
    sleep and increase functional activity) * * * We are not good at
    treating these central changes yet, but rapid progress in the science
    of neurotransmitters may provide new effective strategies for the
    relief of chronic pain.''--Robert Bennett, M.D., Professor of Medicine,
    Oregon Health Sciences Univsity.
        ``The bottom line,'' says Dr. Bennett, ``is that it is possible to
    experience pain, and still look normal and healthy.'' Referring to
    brain imaging techniques such as the SPECT scans mentioned in this
    testimony as a research tool used by Laurence Bradley, Ph.D., Dr.
    Bennett adds: ``It is now also possible to image pain.''
    Recommendations
        In the opening statement made by Dr. I. Jon Russell, it shouldn't
    be up to the patients to change their medical condition into something
    that is well understood; identifying the causes and effective therapies
    for a medical condition is a job for the research establishments.
    Additionally, patient organizations are already doing everything that
    they can to seed research on FMS and CFS. However, these patients
    should not be expected to bear the full cost of researching their own
    disease. To improve the status quo, this Subcommittee is urged to
    consider the following two recommendations:
        The publication of an RFA or PA for pain research related to FMS
    and overlapping pain syndromes with a strong focus on clinical studies
    and covering such areas as: improve understanding of the central
    nervous system pain processing changes that occur in FMS and related
    pain syndromes; identify neurotransmitters and pain receptors that have
    potential therapeutic significance; search for objective abnormalities
    that correlate with disease severity; and, develop a diagnostic marker.
        This RFA or PA should be primarily sponsored by NIAMS. Co-
    sponsorship by NIAID and Institutes representing the new NIH Pain
    Research Consortium is urged.
        Continue to encourage ORWH to help collaborate NIH research efforts
    due to the body-wide nature of FMS and CFS, as well as their high
    frequency of symptom overlap with other regional pain syndromes, many
    of which afflict mostly women.
                                     ______

          Prepared Statement of the American Society for Microbiology
        Thank you for the opportunity to provide written testimony for
    review and inclusion in the hearing record on the fiscal year 1998
    appropriation for the National Institutes of Health (NIH). The American
    Society for Microbiology (ASM) represents over 42,000 life scientists
    who work in research, clinical, public health and industrial
    laboratories. We would like to thank Chairman Specter for his
    leadership and the members of this Subcommittee for their efforts to
    increase funding for biomedical research, especially in view of the
    fiscal constraints that require difficult decisions about budget
    allocations to federal programs.
        Through the NIH, the federal government's premier institution for
    funding biomedical research, Congress wisely has made a long-term
    investment which has returned enormous dividends in scientific
    achievements that have improved the health of the nation's citizens as
    well as people worldwide. Advances in biomedical research have led to
    the dawn of an era of breakthroughs in medicine unprecedented in
    history. Federal investment in basic molecular biology research
    supported by the NIH has yielded revolutionary advances in medical
    diagnosis and treatment and launched the new biotechnology industry.
    The U.S. biotechnology industry has created more than 108,000 high wage
    jobs in less than 20 years, and biotechnology is responsible for
    hundreds of medical diagnostic tests that detect medical conditions at
    an early stage.
        At the same time, despite enormous medical progress, we urgently
    need more research to discover new cures, preventions and treatments
    for a myriad of diseases that still plague humankind, such as acquired
    immunodeficiency syndrome (AIDS), alzheimer's disease, arthritis,
    cancer, depression, diabetes, heart disease, stroke, to name just a
    few, and a growing number of infectious diseases which we will
    highlight in our testimony. These diseases affect over 100 million
    Americans each year and cost society more than $500 billion annually in
    direct and indirect costs. Given the magnitude of the burden of disease
    and disability to society, the untold human suffering to patients and
    their families from disease, and the many research opportunities that
    are ready to be exploited, we urge Congress to continue to make basic
    and clinical biomedical research supported by the NIH the highest
    priority in order to capitalize on past research achievements and to
    pursue vigorously new research opportunities that are desperately
    needed to address current and future health needs.
        To ensure that the fiscal year 1998 funding level for the NIH is
    sufficient to sustain ongoing research progress and to take advantage
    of new biomedical research opportunities, the ASM recommends that
    Congress attempt to increase funding for the NIH by 9 percent in the
    coming fiscal year. Although we recognize that a 9 percent increase for
    the NIH may be a difficult goal to achieve in the current budgetary
    climate, we hope that Congress will seriously consider such an increase
    because it is based on the professional judgment budget identified by
    scientific experts as the best estimate of needed funding for NIH in
    fiscal year 1998. The recommended increase of 9 percent, supported by
    the Ad Hoc Group for Medical Research Funding, a coalition of 200
    organizations, is necessary for biomedical research to keep pace with
    inflation, to maintain a strong research infrastructure and to fund the
    range of research opportunities that are needed to improve all areas of
    health.
        In the following testimony, the ASM would like to bring a number of
    issues to the attention of the Subcommittee: the need to fund peer
    reviewed investigator initiated research project grants; the urgent
    need to fund adequately research required to address threats from new
    and reemerging infectious diseases and the National Institute of
    Allergy and Infectious Diseases (NIAID), the federal government's lead
    agency for research on infectious diseases; the vital role of the
    National Institute of General Medical Sciences (NIGMS), which funds
    basic, nondisease specific research; adequate support for NIH research
    management and support (RMS), and research training and infrastructure
    needs.
    Individual research project grants
        Basic research into fundamental life processes, which is supported
    primarily through individual investigator initiated research project
    grants, is critical to continued technological innovation. To ensure
    that top quality research opportunities are not missed, the NIH should
    fund approximately 35 percent of meritorious research project grant
    applications. A 9 percent increase in funding for NIH would help
    achieve this goal. The peer review process is essential to develop
    scientific and budgetary priorities and should be sustained and
    strengthened to maintain scientific excellence.
    Research required to address threats from new and reemerging infectious
            diseases and the leading role of the National Institute of
            Allergy and Infectious Diseases
        In 1996, infectious diseases in the United States ranked as the
    third leading cause of death. Five of the ten top causes of death in
    1996 were related directly or indirectly to infectious diseases
    (pneumonia, AIDS, chronic liver disease, chronic obstructive lung
    disease, and immunosuppression related to cancer chemotherapy). Data
    presented in the Journal of the American Medical Association (275: 189-
    193, 1996) indicate that the death rate from infectious diseases has
    increased 58 percent since 1980. Trends in death due to respiratory
    tract infections, HIV, and bloodstream infections, account for most of
    these increases. It is estimated that 9,000 people in the United States
    die annually from foodborne illnesses, a number unheard of for a
    developed country. In 1994, 1995 and 1996 locally acquired cases of
    malaria have been reported in the United States, where the disease has
    been nonexistent for 50 years. The appearance of dengue fever in the
    United States, the marked increase of Lyme disease, the reemergence of
    tuberculosis and rabies are just a few examples of the rising tide of
    infectious diseases. In 1993, the largest (>400,000 cases of diarrhea
    due to Cryptosporidium) waterborne disease outbreak in the U.S. history
    occurred. An outbreak of acute, fatal respiratory distress syndrome in
    the Southwestern United States was shown to be due to hantavirus, a
    newly identified virus spread to humans in the feces and urine of the
    deer mouse. Initially thought to be limited to the Southwest, it
    appears that the deer mouse is one of the most common rodents in the
    country and fatal hantavirus cases have been reported as far away as
    Miami and New York. The virus is now known to be carried by other
    rodents as well and another strain of the virus has been identified.
        Antibiotics are now the most commonly prescribed category of drugs.
    Yet the efficacy of these miracle drugs is threatened by an alarming
    increase in the antibiotic resistant bacteria. Although defining the
    precise public health risk of emergent antibiotic resistance is not a
    simple undertaking, there is little doubt the problem is global in
    scope and very serious. Today more than 90 percent of the strains of
    Staphylococcus aureus are resistant to penicillin and other related
    antibiotics. This common bacterium causes a range of infections such as
    boils, toxic shock syndrome, and serious diseases of the lung, heart,
    and bone. Enterococci (a kind of streptococcus) are the most common
    cause of hospital acquired infections. The antibiotic vancomycin often
    is the last weapon available to treat these potentially deadly
    microbes. According to the U.S. Centers for Disease Control and
    Prevention, the incidence of vancomycin resistant enterococci in the
    United States increased 20 times from 1989 to 1993. One of the miracles
    of modern medicine has been out ability to treat successfully bacterial
    pneumonia with penicillin. Before 1987, antibiotic resistant
    Streptococcus pneumoniae (pneumococci) were uncommon in the United
    States. Recent reports indicate that in some parts of the country as
    many as 40 percent of strains of pneumococci are resistant to
    penicillin and other antibiotics. These bacteria are a leading cause of
    deadly bloodstream infections, pneumonia, and meningitis in the elderly
    and are one of the most common causes of middle-ear and sinus
    infections in children.
        Infectious diseases account for 25 percent of all visits to
    physicians in the United States, and approximately $120 billion, or 15
    percent, of all 1992 health care expenditures in the United States were
    related to direct or indirect costs of infectious diseases. The annual
    financial cost of common infectious diseases in the United States is
    estimated by the National Science and Technology Council and the NIH as
    follows: Intestinal infections: $23 billion in medical costs and lost
    productivity; Foodborne diseases: $5 to 6 billion in medical costs and
    lost productivity; Sexually transmitted diseases: $5 billion in
    treatment costs (excluding AIDS); AIDS: at over $10 billion in costs
    annually now the leading cause of death among adults aged 25 to 44;
    Hepatitis B virus infection: over $720 million in combined direct and
    indirect costs; Influenza: $17 billion in medical costs and lost
    productivity; Otitis media: over $1 billion in medical costs; and,
    Antibiotic-resistant bacterial infections: $4 billion in medical costs.
    Combating infectious diseases requires increased funding for research
        Like the organisms themselves, the challenges of detecting and
    preventing infectious diseases are constantly evolving. A strong,
    stable research and training infrastructure is needed to investigate
    the mechanisms of molecular pathogenesis (cause of disease), the
    evolution of pathogenicity, drug resistance, and disease transmission.
    This fundamental knowledge is required to design new vaccines, discover
    new classes of antimicrobial compounds, and devise other novel means of
    preventing and treating infectious diseases.
        The NIH's National Institute of Allergy and Infectious Diseases is
    the federal government's lead agency for funding scientific research on
    causes of infectious diseases, pathogenic mechanisms, host defense
    mechanisms, vaccines, and antibiotics. In collaboration with other
    Public Health Service agencies and industry, NIAID sponsors basic and
    clinical research that yields multiple public health and economic
    benefits. The following are just a few examples of persistent
    biomedical research efforts that have paid off in the past: Before the
    development and introduction of a vaccine, Haemophilus influenzae type
    b (Hib) was the leading cause of pediatric bacterial meningitis in the
    United States with more than 16,000 cases reported each year, of which
    10 percent were fatal. Since the introduction of the Hib vaccine in
    1989, Hib infection has decreased by 95 percent among children under
    age 5, resulting in savings estimated at more than $400 million per
    year; Protease inhibitors used in combination with other drugs such as
    AZT were shown to block the protease enzyme of HIV, thereby preventing
    HIV from replicating itself. In the past year, we have learned that
    many people with AIDS can experience dramatic improvement after
    treatment with these drugs; Chlamydial infection is the most common
    bacterial sexually transmitted disease in the United States, with about
    4 million new cases each year at an annual cost exceeding $2 billion.
    If undetected and untreated the infection can lead to long-term
    complications such as infertility and tubal pregnancy. A highly
    sensitive and noninvasive urine assay that allows earlier detection of
    this infection even before it becomes symptomatic has been developed.
        Increased funding for the NIAID is needed to address the current
    threats from new and reemerging infectious diseases through the
    development of better diagnostic tests, new drugs and vaccines. In
    addition, increased finding would provide new opportunities for making
    major advances to define the potential role of infectious agents in
    chronic diseases, such as cancer, that currently have no known causes.
    The link between infectious diseases and cancer is becoming
    increasingly clear. According to the World Health Report 1996, up to 84
    percent of some cancer cases worldwide are attributed to viruses,
    parasites, or bacteria. The following are several examples:
        Stomach cancer.--Approximately 550,000 new cases of stomach cancer
    per year are attributed to the bacterium Helicobacter pylori, first
    isolated from humans in 1982 (in university research supported by NIH
    finding), this bacterium has been shown to cause duodenal ulcers and
    gastritis. Although other factors are likely to be involved, infection
    with this bacterium has been shown to lead eventually to the
    development of stomach cancer. More research is needed to develop
    effective therapy and vaccines to prevent H. pylori infections and to
    understand its role in cancer.
        Cervical cancer.--Human papilloma virus infection, a sexually
    transmitted infection of the cervix, involves a very high risk of
    developing cervical cancer. The infection is most prevalent in sexually
    active young adults. More research is needed to develop sensitive and
    specific diagnostic tests and to better establish the link between the
    virus and the development of cancer.
        Liver cancer.--The World Health Organization estimates that
    globally there are about 527,000 new cases of liver cancer per year: 82
    percent of which are attributable to infection with the hepatitis B and
    C viruses. More research is needed to determine the host factors and
    mechanisms involved.
        In addition to cancer, there is growing evidence that other chronic
    illnesses may have infectious origins or ``co-triggers''. Research
    suggests that some forms of arthritis, infertility, coronary artery
    disease, asthma, hypertensive renal disease, and juvenile-onset
    diabetes are associated with infections. The autoimmune intestinal
    disorders--Crohn's disease and ulcerative colitis--are very likely to
    be triggered initially by a microbial factor. Consequently, the full
    costs of infectious diseases my be far greater than previously
    estimated. Confirming the infectious origins of such diseases would
    greatly reduce health care costs by treatment with antibiotics and
    other drugs and perhaps by prevention through immunization.
    The role of NIAID research and new and reemerging infections
        The ASM recommends that the following language be included in the
    Senate report to recognize the important role of NIAID research in
    addressing new and reemerging infectious diseases:
        New and reemerging infections.--The Committee believes that it is
    essential that the national strategy to address the threat of new and
    reemerging diseases be broad based, incorporating research as well as
    surveillance activities. Biomedical research supported by the NIH/NIAID
    forms the foundation upon which surveillance and response are
    ultimately based, providing the basic research tools (diagnostics,
    vaccines and therapies) necessary to detect and limit the impact of new
    and reemerging infections. Ongoing research support also contributes to
    the scientific training infrastructure required to maintain the
    capability to identify and control new diseases, both nationally and
    internationally.
    National Institute of General Medical Sciences
        The NIGMS has sponsored and continues to sponsor leading edge basic
    research on recombinant DNA which contributes to direct payoffs in the
    biotechnology industry. The basic, nondisease targeted research
    supported by the NIGMS provides the underpinning for all the disease
    oriented research done by the other Institutes. NIGMS research is
    showing remarkable progress in areas such as new approaches to drug
    design, developmental biology in model organisms, understanding of
    cell-cycle mechanisms and control. Among areas being studied are the
    structures of key molecules, mechanisms by which genetic information is
    stored and transmitted and chemical reactions that sustain life. This
    research provides valuable new knowledge about disease processes and
    new technologies that underlie advances in disease diagnosis,
    treatment, cure and prevention. NIGMS research also contributes to
    commercial applications in the pharmaceutical and agricultural
    industries. One reflection of the importance of past work down by NIGMS
    is the frequent selection of Institute grantees for high scientific
    honors, including Nobel prizes in physiology and medicine.
        The NIGMS also has a major involvement in ensuring a highly trained
    workforce which is essential for the future of biotechnology and for
    maintaining the future health of the biomedical research enterprise.
    NIGMS' role in predoctoral research training helps bring a cadre of
    well trained new investigators into the research system. Efforts must
    be continued to try to increase the numbers of minority PhD's by
    strengthening the capabilities of institutions to recruit and retain
    qualified students. The ASM urges Congress to provide increased funding
    for NIGMS research and training programs.
    Research training and infrastructure needs
        NIH support of grants and contracts to universities has a
    significant impact on the research and educational activities of
    academic institutions across the country and helps to create jobs at
    these institutions. This support of higher education and scientific
    literacy is necessary to ensure that Americans have skills to compete
    in the international arena. Federal investments in basic biomedical
    research have also produced the world's finest scientists. Adequate
    support for research training is necessary to build a foundation for
    the future to maintain U.S. preeminence in biomedical technology.
    Successive generations of talented young individuals bring new ideas
    and renewed energy necessary for continued scientific and technology
    discovery, which is key to the ability of the U.S. to compete
    internationally. Adequate finding should be provided for NIH supported
    National Research Service Award (NRSA) training programs for
    predoctoral and postdoctoral students at academic institutions.
        Increased investment in NIH is also necessary for infrastructure
    development and enhancement of state-of-the-art research equipment and
    supplies. Equipment and instrumentation are increasingly expensive, but
    are necessary to support high caliber research. With the advances in
    genetics, the need for high quality research involving animal models of
    human diseases has never been greater. The costs associated with use of
    transgenic animals are increasing due to the need for disease
    surveillance and specialized facilities required for these animals. The
    NIH's National Center for Research Resource (NCRR) supports essential
    resources for biomedical research. The federal commitment to
    infrastructure needs should be long-term, stable and allocated on the
    basis of merit. The Shared Instrumentation and Small Grant Programs and
    the Comparative Medicine Program for Animal Research require additional
    funding to provide the necessary underpinning for research efforts.
    NIH research management and support
        The ASM is concerned about continued budget reductions for the RMS
    budget. Erosion of funding for RMS will impact negatively on science.
    RMS helps fund scientific workshops and conferences, peer review of
    grants, site visits for oversight of research programs, outreach
    programs, communication activities about biomedical research, and
    adequate stewardship, mentoring, planning and accountability for NIH
    research and expenditures. The communication of scientific and health
    information is essential to NIH's mission. It is crucial that NIH
    communicate effectively with many groups, including scientists engaged
    in biomedical research, health care practitioners, patients, the
    general public, the media and the Congress. NIH represents a $13
    billion investment by Americans based upon an expectation of
    substantial returns to themselves and their loved ones. This investment
    must be managed wisely to ensure continued public confidence and
    adequate stewardship of pubic funds is critical to success. Innovative
    and quality managers and management systems are necessary to achieve
    responsible stewardship. Reductions below necessary levels for RMS
    could interfere with efforts to streamline and reinvent grants
    management and could impede program growth at NIH.
        Thank you for the opportunity to share our concerns with the
    Subcommittee.
                                     ______

        Prepared Statement of the National Minority Public Broadcasting
                                   Consortia
        The National Minority Public Broadcasting Consortia (Minority
    Consortia) submits this statement on the fiscal year 2000 appropriation
    for the Corporation for Public Broadcasting (CPB). Our primary missions
    are to bring a significant amount of programming by and about our
    communities into the mainstream of public broadcasting. And our primary
    message today is that we want to get back on course with CPB in our
    working partnership to increase the diversity of programming available
    through public broadcasting. We therefore request that Congress
    provide:
      --$5 million for the Principles of Partnership initiative as agreed
            to by CPB in 1994 in addition to the current funding provided
            to the Minority Consortia. We request that any funding increase
            up to $5 million over the fiscal year 1999 level be provided
            for this far-sighted initiative; and
      --$325 million in fiscal year 2000 CPB funding as requested by the
            Administration.
        A commitment of $325 million by the federal government to public
    television and public radio is a wholly reasonable contribution toward
    this national treasure. If there is one thing that the past few years
    debate on public broadcasting has shown is how highly people in this
    nation value it. The three years of CPB recissions should be reversed
    in the fiscal year 2000 CPB appropriation.
        Public broadcasting is particularly important for minority and
    ethnic communities. While there is a niche in the commercial broadcast
    and cable world for quality programming about our communities and our
    concerns, it is in the public broadcasting industry where minority
    communities and producers are more able to bring you quality
    programming for national audiences. In 1994, CPB initiated research
    among Asian American and Native American communities documenting that
    respondents felt their communities were negatively stereotyped on
    commercial television but that public television had more realistic
    portrayals.\1\ This survey also revealed that both groups wanted
    increased visibility in public television and further recommended that
    there be expanded promotion of public broadcast programming utilizing
    Asian-American community groups and tribal organizations. Earlier CPB
    surveys of the Latino and African American communities showed similar
    findings.
    ---------------------------------------------------------------------------
        \1\ Reaching Common Ground: Public Broadcasting's Services to
    Minorities and Other Groups, July 1, 1994, pages 41-42 of the Appendix.
    ---------------------------------------------------------------------------
        It is clear that we and our communities \2\ and CPB need each other
    to address the Congressional mandate regarding minority communities and
    minority programming in the CPB authorizing statute. CPB, the Public
    Broadcasting System (PBS) and America's Public Television Stations
    (APTS) and the stations want and need the culturally diverse
    programming for public broadcasting that the five Minority Consortia
    organizations can help develop, produce and distribute. We, on the
    other hand, need continued financial and in-kind resources from CPB and
    public broadcasting to increase our programming production capacity and
    to facilitate business planing toward financial self-sufficiency. We
    have had some promising negotiations with CPB, PBS and APTS over the
    past several years on both of these counts, but neither effort has yet
    carried through to fruition.
    ---------------------------------------------------------------------------
        \2\ The communities we represent are not marginal in number. We are
    an increasingly large portion of the U.S. population. According to 1996
    figures, the communities represented by the Consortia collectively
    constitute more than 27 percent of the U.S. population and are
    projected by the Census Bureau to constitute nearly 50 percent of the
    U.S. population by the year 2050. In addition, children, who are a
    primary focus of public broadcasting, comprise a much greater
    percentage of the minority population than the public at large. The
    Census Bureau, in an August 1995 publication, shows that while 20.4
    percent of people in the U.S. are under age 15, children and youth
    constitute a much higher proportion of minority groups. Persons under
    age 15 make up the following proportions of our communities: African
    American, 36.5 percent; Indian/Aleut/Inuit, 29.8 percent; Asian
    American/Pacific Islander, 27.6 percent; and Hispanic, 30.7 percent.
    ---------------------------------------------------------------------------
        Principles of Partnership Initiative. Below is a brief description
    of partnership effort between the Minority Consortia, CPB, APTS and PBS
    which we urge Congress to support:
        In 1994, after protracted discussions, CPB publicly announced
    funding to formalize partnerships between the Minority Consortia
    organizations with CPB, PBS, APTS and television stations to maximize
    all our resources in an effort to increase multicultural educational
    programming for television. The funding for this Principles of
    Partnership initiative, $5 million, was to begin October 1, 1995.
    Concurrent with this funding, the Minority Consortia agreed on a joint
    plan of distribution methodology, allocating funds for production,
    community capacity-building, and program support functions. This
    agreement between the Minority Consortia and CPB was announced with
    considerable fanfare in a CPB newsrelease and reported in the public
    broadcast press in June, 1994. There is also a lengthy section
    (attached) on the Principles of Partnership agreement in the CPB report
    presented to the 103rd Congress, Reaching Common Ground: Public
    Broadcasting's Services to Minorities and Other Groups, July 1, 1994.
        The Principles of Partnership included:
      --establishment of an annual $5 million Minority Program Fund for
            development, production and capacity-building, including
            promotion and outreach;
      --each Consortia organization would enter into a partnership with a
            public television station;
      --producers of all races and backgrounds and from consortia,
            stations, and regional networks would be eligible to submit
            proposals and receive grants;
      --grants would be available to national and regional programs as well
            as audience-building and outreach services and ``capacity
            building'' activities;
      --CPB would create system advisory panels including top CPB, PBS and
            APTS programmers, station executive and independent producers;
      --programming supported by the Minority Program Fund would be
            available to all PTV stations;
      --after five years, the arrangement would be evaluated and changed if
            advisable.
        Unfortunately CPB, citing budget cuts, decided not to provide the
    $5 million funding for the partnership initiative. However, CPB did
    create an $11 million ``Futures Fund'' which contained no specific
    initiatives for the work of the Minority Consortia. Because the
    Principles of Partnership funding was to be in lieu of funding
    increases (as supported by Congress) for infrastructure and program
    development, we feel strongly that CPB, despite budget pressures,
    should have committed funding for the Principles of Partnership--the
    timing was optimum. By the end of 1994, we had been working with CPB,
    APTS, and PBS, and others in the public broadcast field for over a year
    to reach this agreement. Understanding and good will was at an all time
    high among the ``principals'' of this partnership.
        Crossing Cultures Initiative.--Following the demise of the
    Principles of Partnership plan, the Minority Program Consortia worked
    with CPB and submitted to the Corporation in January of 1996, a multi-
    faceted proposal entitled Crossing Cultures.\3\ That proposal focused
    on efforts to attain financial self-sufficiency through diversifying
    and expanding our revenue sources and developing joint ventures in
    marketing and distribution services to better meet the growing needs of
    our increasingly diverse audiences. This proposal also involved
    streamlining operational efficiencies and strengthening partnerships
    with public broadcasting stations and organizations. While this
    proposal is consistent with the types of activities CPB is funding
    through its $11 million Futures Fund, we do not have a clear idea of
    CPB's commitment to our proposal. And the proposed fisal year 2000 CPB
    budget has no specific vision for continued mission and support of the
    Minority Consortia and increased multicultural programming.
    ---------------------------------------------------------------------------
        \3\ NLCC was not a participant in the proposal as originally
    presented.
    ---------------------------------------------------------------------------
        The Minority Consortia tried to assist CPB in finding a consultant
    who could work with each of us on the fact finding and assessment
    necessary to make sound business decisions about developing these joint
    ventures and revenue streams. Last fall CPB hired a consulting group
    whose work is currently in progress. We now look for assurances that
    CPB will commit funding resources to implement the plan. The report of
    the consulting group is to be completed by June 1997.
        Congressional Support/Funding History.--Since 1988, eight House and
    Senate authorizing and appropriations reports have expressed support
    for CPB funding of the Minority Consortia \4\ and multicultural
    programming.
    ---------------------------------------------------------------------------
        \4\ House Report 100-825, report of the House Committee on Energy
    and Commerce on the Public Telecommunications Act of 1988; Senate
    Report 100-444, report of the Senate Commerce, Science and
    Transportation Committee, on the Public Telecommunications Act of 1988;
    House Report 102-363, report of the House Committee on Energy and
    Commerce on the Public Telecommunications Act of 1991; Senate Report
    102-221, report of the Senate Commerce, Science and Transportation
    Committee report on the Public Telecommunications Act of 1991; House
    Report 102-708, report of the House Appropriations Committee on the
    Fiscal Year 1993 Labor, HHS, Education Appropriations Act (fiscal year
    1995 CPB funding); House Report 103-156 report of the House
    Appropriations Committee on the Fiscal Year 1994 Labor, HHS, Education
    Appropriations Act (fiscal year 1996 CPB funding); House Report 103-
    553, report of the House Appropriations Committee on the Fiscal Year
    1995 Labor, HHS, Education Appropriations Act (fiscal year 1997 CPB
    funding); and House Report 104-659 report of the House Appropriations
    committee on the Fiscal Year 1997 Labor, HHS, Education Appropriations
    Act (fiscal year 1999 CPB funding).
    ---------------------------------------------------------------------------
        Despite good Congressional interest, funding for the work of the
    Minority Consortia has remained extremely modest and has certainly
    matched the overall increases for CPB since the 80's. For instance, in
    fiscal year 1982, the first year that CPB provided organizational
    support funding for four consortia organizations, we collectively
    received $581,000, or .36 percent of the CPB budget. By fiscal year
    1986, that figure was up to .42 percent, or $663,500 for organizational
    support of out a total CPB appropriation of $310 million.
        In fiscal year 1990 CPB provided the first Multicultural Program
    Funds \5\ ($800,000) to the Minority Consortia organizations. These
    Multicultural Program funds are not retained by our organizations, but
    rather are regranted to producers for public television programs.
    ---------------------------------------------------------------------------
        \5\ The Multicultural Program Fund was mandated by the Public
    Telecommunications Act of 1988. Congress left the decision of the
    funding level to CPB, which has funded the program at about $3 million
    annually.
    ---------------------------------------------------------------------------
        The most recent Congressional report (H. Rpt. 102-363) \6\
    accompanying a CPB reauthorization Act states:

        \6\ House Report 102-363, the House Committee on Energy and
    Commerce report accompanying the Public Telecommunications Act of 1991
    (Pub. L. 102-366, signed August 26, 1992), which applies to fiscal
    years 1994, 1995, and 1996. Congress has not enacted reauthorization
    legislation since Public Law 102-366.
    ---------------------------------------------------------------------------
              The Committee is concerned that despite the mandate of the
            1988 legislation, funding for the five minority consortia as
            well as the production of national programs by and about ethnic
            minorities in America remains inadequate. The Committee
            encourages CPB to increase significantly (emphasis added) its
            funding both for the five minority consortia and the Minority
            Program Fund.

        The above language applied to fiscal years 1994, 1995, and 1996.
    During that time the CPB organizational or administrative support for
    the Minority Consortia increased from $1.25 million to $1.5 million--
    not what we would term a significant increase to support all minority
    programming for public broadcasting. During these years, CPB decided to
    increase the amount of Multicultural Program Funds that we would
    administer--we had been administering about $1 million of the $3
    million Multicultural Program Fund. Beginning in fiscal year 1994, we
    received $1.6 million in Multicultural Program Funds. Beginning in
    fiscal year 1995 we administered the entire Multicultural Program Fund.
    As of fiscal year 1997 we will receive 1.7 percent of the CPB budget in
    combined organizational support program funds ($1.45 million in
    organization support and $3.3 million in Multicultural Program funds
    for the five organizations combined). Despite ups and downs in annual
    appropriations, funding for CPB grew 72 percent from fiscal year 1985
    through 1997. During this same time CPB funding for the minority
    consortia organizational support went from $663,500 (.44 percent of the
    CPB budget) to $1.4 million (.55 percent of the CPB budget).
        Last year the House Appropriations Committee in House Report 104-
    659 instructed the CPB President to be prepared to testify during the
    fiscal year 2000 hearing (which will be March 19, 1997) regarding steps
    CPB has taken during fiscal years 1996 and 1997 to strengthen and
    enhance minority programming, and to support minority media
    professionals career development.
        Common Concerns. When we say that we want increased programming by
    and about our communities, we do not mean that our programming is
    limited in its value to members of our communities. Nothing could be
    further from the truth. The notion that minority producers cannot
    produce programming of interest to the general viewing audience has
    permeated the system for too long. Our concerns are common to all of
    America--crime, drugs, literacy, education, teen age pregnancy.
    Examples of minority programming well received by the general viewing
    audiences include Stand and Deliver, Maya Lin, Daughters of the Dust,
    Storytellers of the Pacific, and In the White Man's Image. The list is
    very long.
        It is true that we are extremely interested in bringing to the
    general public our histories--histories which include family
    traditions, educating our youth, the civil rights movement--which have
    for have for too long been unreported and misreported. It is in the
    national interest that the many peoples who form the mosaic of the
    United States better understand and appreciate each others history,
    culture, and contributions to today's society.
        Thank you for consideration of our request to fund the Principles
    of Partnership Initiative. Congress has the power to help public
    broadcasting renew its commitment to the work of the Minority Consortia
    in expanding the diversity of public programming and attract new
    audiences to the public broadcasting system.
                                     ______

     Prepared Statement of Lynn A. Drake, M.D., President-Elect, American
                             Academy of Dermatology
        Mr. Chairman and members of the Subcommittee: My name is Lynn
    Drake, M.D. I am a Professor of Dermatology and Chairman of the
    Department of Dermatology at the University of Oklahoma Health Sciences
    Center. I am also President-elect of the American Academy of
    Dermatology
        My colleagues and our patients thank you, Chairman Specter, and
    members of the Subcommittee for your continued support for the National
    Institutes of Health (NIH) and the CDC. The Academy acknowledges the
    very difficult choices that this Subcommittee has made over the last
    few years. We are grateful that the biomedical research enjoys
    bipartisan support in this Subcommittee and in the Congress.
        Our nation's biomedical research infrastructure is an intricate
    relationship of academia, industry, and the federal government. The NIH
    serves as the primary source for basic research through universities
    and independent research institutions. This synergy has alleviated
    suffering for millions of Americans by fostering the development of
    innovative drugs and vaccines. Biomedical research is also the
    foundation upon which all medical care is based. Without the NIH we
    would not be the world leader in research and patient care.
        Support for biomedical research has been very good for our patients
    and our economy. This investment has spawned the development of the
    biotechnology industry and it is estimated that medical research
    annually contributes more than $40 billion to our economy in non-health
    areas from spin-off discoveries. For example, research advances in
    fiber optics made important contributions to the development of laser
    medicine. As the saying goes, ``A rising tide lifts all boats.''
        Dermatologists are trained to treat over 3,000 disorders of the
    skin, hair, nails and mucous membranes. Support for the NIH, most
    especially NIAMS, has broadened our knowledge of common as well as rare
    skin diseases.
        To ensure that NIH funding levels are consistent with the research
    opportunities identified in the NIH professional judgment budget, the
    American Academy of Dermatology supports a funding increase of 9
    percent for the NIH in fiscal year 1998. In addition, the Academy also
    requests an increase for the Centers for Disease Control and
    Prevention's Skin Cancer Prevention Program. This program is currently
    funded at a level of $1.8 million. We request that funding for this
    program be increased to $3 million.
        Skin cancer is the most frequent cancer diagnosis, more than all
    other cancers combined. This year, over 1 million new cases of skin
    cancer will be diagnosed in the United States. Nearly 80 percent of the
    new cases will be nonmelanoma skin cancers, namely basal cell or
    squamous cell carcinomas. Although both basal cell and squamous cell
    carcinomas have a cure rate of 95 percent if detected and treated
    early, 1,200 Americans will die of these nonmelanoma skin cancers.
        Melanoma is the most deadly form of skin cancer. It is estimated
    that 40,300 new cases of melanoma will be diagnosed this year, an
    increase of 12 percent over 1995 levels. Melanoma is deadly. This year,
    7,300 Americans will die from melanoma, accounting for six out of every
    seven skin cancer deaths. While the death rate from melanoma continues
    to be highest for older white males, melanoma strikes across the age
    spectrum and is now the most common cancer among people between the
    ages of 25 and 29.
        Skin cancer is preventable. A determined public health effort of
    prevention, education and early detection, combined with basic
    biomedical research into the mechanisms of skin cancer, will reduce the
    incidence of skin cancer and skin cancer-related deaths. The Academy
    believes that this important skin cancer prevention program should
    receive additional resources to enhance the multi-faceted activities of
    the National Skin Cancer Prevention Program. If funding levels were to
    be increased from the current level of $1.8 million to $3 million in
    fiscal year 1998, the funds would be well spent. These additional
    dollars would allow the CDC to expand its efforts to teach children and
    their care givers about healthy skin behaviors, to strengthen
    professional education activities, to disseminate skin cancer
    prevention guidelines to our nation's schools and to monitor the
    behavioral risk factors for skin cancer.
        Skin cancer can also be effectively treated, if found early. I
    invite all the members of the Subcommittee to participate in an
    upcoming annual skin cancer screening of Congress. Members of the
    Washington, DC Dermatological Society will conduct a free skin cancer
    screening on May 7, 1997 between 10:00 am and noon in the Rayburn First
    Aid Station, Room B344.
        Biomedical research is beginning to provide answers to our
    questions about skin cancers. Earlier this year, researchers supported
    by the National Institute of Musculoskeletal and Skin Diseases (NIAMS)
    and the National Cancer Institute (NCI) significantly advanced our
    understanding of skin cancer. Scientists identified the gene that is
    the cause of a rare inherited disorder, basal nevus syndrome, and
    acquired basal cell carcinoma. We are hopeful that NCI-supported
    scientists will be successful in their efforts to develop a melanoma
    vaccine.
        Researchers believe that their findings may eventually lead to
    innovative treatments for basal cell carcinomas. Today, dermatologists
    treat basal cell carcinoma with some type of surgery, although
    radiation and chemotherapy are sometimes used alone. Innovative
    treatments that could block the mutation of this gene would have many
    benefits and should lower costs.
        In December, I organized an NIH workshop on Patient Outcomes in
    Basal Cell and Squamous Cell Skin Cancer. The goals of this workshop
    were to examine the adequacy of data sources now available; to examine
    the morbidity and socio-economic burden of nonmelanoma skin cancers; to
    review ongoing programs; and to identify research opportunities to
    improve patient outcomes across the health spectrum. I cannot stress,
    enough, the importance of outcomes research. This research is
    especially critical to understanding better the success of diagnostic
    and treatment decisions for skin and other disease. In fact, outcomes
    research will provide key information on such important issues as
    quality of life, patient satisfaction, and cost-effectiveness, and will
    greatly influence medical decision-making. Outcomes research should be
    funded.
        The research supported by the NIH is crucial to our fight against
    other chronic, debilitating and sometimes fatal skin diseases. Skin
    diseases are an important health concern for this country. This year,
    it is estimated that 60 million Americans will be affected by skin
    disease, costing our economy over $7 billion in treatment costs and
    lost productivity. Occupational skin disease remain one of the most
    common causes of worker's compensation claims. An increase of 9 percent
    would provide $280 million to the NIAMS, or approximately 2 percent of
    the total cost of skin disease.
        Psoriasis is a common skin disorder, affecting 1-2 percent of the
    population. Previously scientists believed psoriasis to be a primary
    disorder of the keratinocytes, the most common cell in the outer layer
    of the skin. Recent investigations have greatly altered our
    understanding of psoriasis. Some researchers now view psoriasis as an
    immunologic disorder, and this observation has lead to new treatments
    for psoriasis. A tissue bank established by the National Psoriasis
    Foundation and supported by the NIAMS is helping scientists make
    progress in identifying the genes linked to this disease.
        Eczema is a term often used to describe a family of conditions that
    include: atopic, contact, occupational, seborrheic, and stasis
    dermatitis. Millions of Americans suffer from some form of eczema.
    While bench to bedside research is beginning to pay dividends, there is
    much we do not know about how to prevent and best treat eczema. There
    is considerable interest around the world in identifying the numerous
    allergens that trigger eczema and protecting patients from them.
        Rosacea is a common, chronic skin disease that we are now just
    beginning to understand. Although this disease may affect children, it
    is usually a disease of adults. Some estimate that rosacea affects at
    least 20 percent of the adult population, and that perhaps 40 percent
    of those over age 50 are affected. It is characterized by extended
    blushing or by redness of the central area of the face due, in part, to
    telangiectasias, the dilation of the small blood vessels. Rosacea is
    frequently misdiagnosed as adult acne, because acne-like blemishes are
    a main symptom of the disorder. Unlike acne, comedones (blackheads) are
    rare. When severe, individuals can have disfigurement of the nose,
    which is commonly mistaken for alcohol abuse. Rosacea is a complex
    problem and its cause remains unknown. Emotional stress, exposure to UV
    radiation, extremes in temperature, alcohol, menopause, and some food
    preservatives can aggravate the condition. More research is needed to
    determine the cause of this disorder, to better understand how
    environmental conditions affect patients, and to discover more
    effective treatments.
        Mycologic or fungal infections are a major health problem,
    affecting nearly 18 percent of the U.S. population. Dermatologists
    treat fungal infections of the nails, skin, and hair. Fungal infections
    can vary in severity, but can be most serious in individuals who are
    already immune-compromised--individuals suffering from diabetes,
    cancer, AIDS or other diseases. In these individuals, the infection may
    be atypical, serious and aggressive, making treatment more difficult.
    More research is needed to develop antifungal treatments which are less
    costly and less toxic.
        Alopecia areata is a disease which causes hair loss on the scalp
    and elsewhere on the body. In its most severe form, alopecia
    universalis, all hair on the entire head and body is lost, leaving the
    skin unprotected from the sun and other environmental hazards. The nose
    and sinuses are also unprotected from foreign particles and bacteria.
    Children are the most often affected by this disorder. While alopecia
    areata is not life threatening, it is emotionally and psychologically
    devastating to these young children. To date, there have been two
    international workshops on this disorder, but much remains unanswered.
    Researchers are still unclear as to what triggers the attack on the
    hair follicle. Is alopecia areata an autoimmune disease, an immune-
    mediated disease, what is its genetic link? Without answers to these
    basic questions, we cannot hope to develop more effective treatments or
    a cure.
        Systemic lupus erythematosus (lupus or SLE) is a disease affecting
    disproportionately young African-American women, and a disease of great
    interest to members of this subcommittee. Research has significantly
    broadened our knowledge of the genetic factors involved in lupus,
    including those infectious agents and other environmental factors that
    trigger this disease in susceptible individuals. Research advances in
    lupus have been cost effective--delaying kidney failure due to
    nephritis, the most serious common complication of this disease.
        Scleroderma is a another serious disease that predominantly strikes
    women of childbearing years. Scleroderma is a chronic, auto-immune
    disease of the connective tissue. Scleroderma patients overproduce the
    protein, collagen. Its cause or causes are unknown. The treatment
    program for these patients varies widely, depending on the severity of
    the symptoms. Women with this disease may have thickening of the skin,
    especially around the joints; Raynaud's Phenomenon, an abnormal
    sensitivity to cold; gastrointestinal, renal, cardiac and pulmonary
    problems. The NIAMS supports both basic and clinical research on
    scleroderma. Recently, NIAMS added scleroderma to the list of diseases
    eligible for applications under the Specialized Centers of Research
    (SCOR) program.
        Vulvodynia is a spectrum of chronic vulvar pain disorders. Today,
    no one knows what causes vulvodynia. Some cases of this disorder may be
    attributed to compression or disease of the pudendal nerve, others to
    Human Papilloma Virus (HPV), chronic candida infection and reactions to
    the anti-fungal treatments for candidiasis, but there is no clear
    agreement. There is also no specific test for vulvodynia and diagnosis
    is often after ruling out other illnesses or infections. Unfortunately,
    there are no cures for this disorder, treatment is symptomatic.
    Additional research is desperately needed to answer the numerous
    questions concerning this disorder.
        Sjogren's Syndrome is a third auto-immune disease that
    predominantly strikes women. The clinical manifestations of Sjogren's
    Syndrome are the result of decreased exocrine gland function throughout
    the body. Dry skin, sweating and itching are frequent symptoms as are
    drying of the eyes and other mucosal surfaces. In addition, Sjogren's
    Syndrome is associated with a number of life-threatening complications,
    including renal disorders and vascular complications. Currently, there
    is no known cure for Sjogren's Syndrome and the treatments available
    are aimed only at relieving the many symptoms of this syndrome.
        Dermatitis herpetiformis is an intensely itchy, chronic disorder
    that may start at any age, including childhood. Most patients who
    suffer from this disease have an associated sensitivity to gluten, a
    protein found in wheat, oats, barley, rye and other grains. Dermatitis
    herpetiformis may often be confused with many other conditions,
    including scabies, chickenpox and eczema, and patients may be
    misdiagnosed before being effectively treated. Like Sjogren's Syndrome,
    individuals with dermatitis herpetiformis have a marked increase in the
    incidence of certain histocompatibility antigens and it is not uncommon
    that these two disorders are occasionally seen in the same patient.
        The Ichthyoses are a family of skin diseases in which there is
    abnormal development of the outermost layers of the skin. Researchers
    have discovered that the genes for many of the molecules involved with
    the structure of our skin are clustered on chromosome 1, in an area
    called the epidermal differentiation complex. Recent findings have
    linked several forms of ichthyosis, including a form that causes self-
    amputation, to mutations of a region of chromosome 1--the first time
    that disease was clearly linked to the epidermal differentiation
    complex.
        Epidermolysis bullosa (EB) is another rare skin disease that has
    provided us with a great deal of information about skin. Researchers
    have identified specific genetic defects that cause several forms of
    EB. The establishment of an EB registry has allowed scientists to
    collect medical information and tissue and blood samples from EB
    patients, greatly facilitating efforts to identify the genetic causes
    of EB. Recently, researchers have uncovered an exiting link between the
    molecular mechanisms leading to skin fragility in EB and the muscle
    wasting associated with a variant of muscular dystrophy.
        Pemphigus, like EB, is a blistering skin disease. In pemphigus,
    patients produce autoantibodies that attach the demosomal proteins that
    hold the skin together. Future research in this disease is needed to
    learn how and why these autoantibodies form as well as to determine the
    relative role of environmental factors--such as viruses, bacteria,
    allergens and toxins--to this disease.
        Ehlers-Danlos Syndrome is another group of rare inherited disorders
    that affects the skin as well as the joints and other organs. Patients
    with Ehlers-Danlos Syndrome have extremely fragile skin that bruises
    and tears easily, and these wounds may take weeks or even months to
    heal. The NIAMS has been the lead institute in research efforts to
    understand the mechanism of wound healing and this effort must continue
    to be supported.
        Marfan Syndrome is a heritable disorder of the connective tissue,
    caused by single abnormal or mutant gene. In addition to the skin,
    patients with Marfan Syndrome suffer from abnormalities in three areas:
    the eye, the skeletal system and the cardiovascular system. The
    severity of this syndrome varies greatly; and as there are no objective
    tests for diagnostic confirmation, diagnosis can be difficult. There is
    still no cure for Marfan Syndrome, although a variety of treatments
    have been used with some success.
        Ectodermal Dysplasia (ED) is not a single disease, but a group of
    closely related disorders. More than 130 types of ED have been
    identified. Individuals with ED have absent or poorly functioning sweat
    glands; abnormal hair and hair follicles, and the natural hair and skin
    oils may be missing. Patients with ED are prone to rashes and are slow
    to heal when they are bruised or cut. Many are photosensitive, but the
    most common trait is the absence of teeth. Although many types of this
    disease have been identified and documented, there is a great deal that
    we do not know about these disorders. Additional research is needed to
    improve the care and management of these patients.
        Pseudoxanthoma elasticum (PXE) is a heterogeneous inherited
    disorder, the hallmark of which is the dystrophic calcification of the
    elastic tissue of the skin, the eyes and the arteries. PXE may be
    inherited as either an autosomal recessive or dominant trait, but
    environmental influences may modify the clinical expression of this
    disease. As are most inherited diseases there is no known cure for PXE.
    Because the skin manifestations of this disease are so prominent, the
    dermatologist is often the specialist who makes initial diagnosis and
    who can coordinate the care of the PXE patient with the
    ophthalmologist, cardiologist, vascular surgeon, plastic surgeon, and
    other health professionals. Additional research is desperately needed
    to answer the many now unanswerable questions about PXE--what is the
    genetic cause for this disease, how can we best treat it, how can we
    prevent it?
        Sturge-Weber Syndrome is characterized by an extensive vascular
    nevi or port wine stain at birth, involving the upper eyelid and
    forehead. In Sturge-Weber, the port wine stain is associated various
    neurological abnormalities as well as irregularities in the eyes and
    internal organs. Children with Sturge-Weber begin to have seizures at
    one year of age. These convulsions are caused by an excessive growth of
    blood vessels on the brain and often appear on the opposite side of the
    body from the port wine stain. The cause of this syndrome is unknown
    and more research is needed.
        Porphyrias are a group of seven, rare and complex disorders. The
    porphyrias are characterized by a mutation in genes that code for
    various enzymes of the heme biosynthetic pathway; and each porphyrias
    is biochemically unique. What causes these genes to mutate is still
    unknown. These diseases are often manifest is a variety of cutaneous
    lesions and patients are also very sensitive to sunlight and to many
    drugs. There is no cure for porphyria and treatment varies depending on
    the type. Additional research is needed to better understand what
    causes the genes to mutate. Better understanding of this process could
    eventually lead to the development of new and better treatments.
        Vitiligo is a disease in which patients develop white spots in the
    skin that vary in size and location. These ``spots'' develop when the
    pigmented cells of the skin, melanocytes, are destroyed and melanin can
    no longer be produced. It is estimated that 1-2 percent of the
    population suffers from vitiligo, and in earlier times, these
    individuals were often confused with lepers. Although more noticeable
    in darker complected individuals, vitiligo strikes all races equally.
    More research is needed to understand why the body destroys these cells
    as well as to understand the relationship of this skin condition to its
    many complications, including Graves' Disease and other diseases of the
    thyroid, deafness and blindness.
        The Academy also supports adequate funding for other institutes at
    the NIH. The National Institute for Allergy and Infectious Diseases
    (NIAID) funds important research on AIDS, sexually transmitted disease
    (STD), and other infectious disease. Dermatologists daily treat the
    many cutaneous manifestations associated with HIV infection. These
    diseases include bacterial infections, viral infections, fungal and
    yeast infections, protozoal infections, hyperkeratotic and neoplastic
    diseases of the skin. Dermatologists also treat other STDs, such as
    genital herpes, human papilloma virus, and genital warts. Future
    research opportunities for HIV and other STDs include the development
    of topical microbicides, new and more effective therapies, vaccines and
    improved prevention strategies.
        Our skin is our first defense against disease and toxins in the
    environment. The Academy supports increased funding for the National
    Institute of Environmental Health Sciences (NIEHS). Our specialty has
    taken a lead on environmental hazards to the skin, at home and at work.
    Increased funding for NIEHS will allow this institute to expand
    research on the action spectrum for melanoma, percutaneous absorption
    of toxic and other chemicals and how that absorption may be affected by
    exposure of the skin to ultraviolet radiation.
        Expanding our basic knowledge of the human skin will provide
    insight into other systemic disease and may provide better treatments.
    The skin is an excellent delivery system for drugs. The development of
    skin patches and other devices allow for sustained release of drugs.
        Mr. Specter and members of the Subcommittee, as I stated earlier,
    biomedical research is the foundation upon which all advances in
    medical treatment is based. I appreciate your attention and the
    opportunity you have given the American Academy of Dermatology today
    and welcome the opportunity to answer any questions.
                                     ______

    Prepared Statement of the National Association of Anorexia Nervosa and
                              Associated Disorders
        ANAD is America's oldest non-profit organization dedicated to the
    prevention and treatment of eating disorders. Founded in 1976, ANAD
    provides free helping services for the estimated eight million victims
    in the United States.
        ANAD's goal is the recognition of anorexia nervosa, bulimia and
    other illnesses for research, education and prevention efforts so that
    eating disorders can be eradicated.
        The Association supports equal treatment under insurance and
    medical reimbursement rules for these illnesses, which affect
    individuals both physically and mentally. Access to appropriate care is
    severely limited in today's managed care environment.
        Eating disorders strike all segments of our population, ruin lives,
    and often cost tens of thousands of dollars to treat a single case.
    Anorexia, bulimia and related illnesses have one of the highest
    mortality rates of any psychiatric illness--as many as six percent of
    serious cases die. Some studies indicate that the incidence of eating
    disorders is growing rapidly in increasingly younger populations.
        An ANAD 10-year study documents that 43 percent of victims report
    the onset of their illness by age 15 and 86 percent by age 20, but only
    50 percent report being cured. Large numbers of sufferers are now in
    their twenties, thirties, forties or older.
        Dr. Timothy Brewerton of the Medical University of South Carolina
    surveyed 3,100 fifth through eighth grade students. Forty percent felt
    they were too fat or wanted to lose weight even though less than 20
    percent actually were overweight. One third of these children said they
    dieted, 10 percent had fasted, and almost five percent had vomited to
    lose weight. Any child who maintains these behaviors for any length of
    time runs the risk of developing a serious illness.
        It is not surprising, given our culture's obsession with thinness,
    and billion dollar industries dedicated to weight loss, that large
    numbers of young people abuse and misuse diet products sold over the
    counter and without any restrictions. They are not aware that these
    potentially dangerous products can cause lifelong problems or even
    death.
        While other illnesses, including alcoholism and chemical
    dependency, receive massive levels of funding for research and
    prevention, eating disorders remain the major illnesses in our nation
    which receive totally inadequate support and understanding.
        For these reasons we ask Congress to allocate $10,000,000 to
    prevent eating disorders through education and public awareness
    programs. We ask another $10,000,000 be allocated for research and that
    part of the research funding be allocated to study and promote primary
    prevention.
        Prevention programs available at an early age could be instrumental
    in reducing the incidence of eating disorders. We need to teach correct
    notions about nutrition, body development and growth in an atmosphere
    which also encourages emotional health. We need programs designed to
    support the best life decisions. Our young people need to learn self-
    respect, appropriate responses to both successes and failures, and ways
    of handling change, which is always difficult for a person with an
    eating disorder.
        Although eating disorders have many causes, funding is desperately
    needed to develop a comprehensive public health program to educate our
    youth and our citizens in general to overcome our mistaken and
    dangerous fascination with thinness as an ultimate ideal and to focus
    on the real values in life and health. The media barrage which promotes
    thinness is so enormous that inaction regarding these issues is
    unthinkable!
        ANAD urges the Senate to act on this issue, thereby saving both
    money and needless suffering. ANAD's track record indicates that low-
    cost education and health services can be effective in helping
    individuals with these illnesses and preventing them.
       significant concerns to better understand eating disorders issues
    Need for Access to Treatment:
        High-quality treatment for eating disorders is available.
    Unfortunately, large numbers of victims are unable to actually access
    this treatment. Victims of eating disorders who have private insurance
    routinely are refused reimbursement for the treatment they require.
        Typically, people who have eating discorders require specialized
    medical and psychiatric treatment. But, because insurers often treat
    eating disorders only as a mental illness, patients are both denied the
    medical treatment they require and subjected to the extremely low caps
    on benefits for treatment of mental illnesses.
        For example, patients with serious eating disorders often require
    extensive medical treatment to restore the weight they have lost.
    Ideally, this weight restoration should occur concurrently with the
    provision of psychological services and behavior modification. Yet most
    insurance companies will not cover medical services and psychological
    services concurrently--making it hard for patients to receive
    comprehensive treatment.
        Action must be taken on many different fronts to improve patients'
    access to treatment for their illnesses. On the legislative front,
    proposals for insurance reform and health care reform must ensure that
    patients with eating disorders can receive reimbursement for both
    medical treatment and mental health care.
        ANAD is working for equal treatment of mental and physical
    disorders under both federal and state insurance laws. The cost of not
    treating eating disorders is often hidden by confused and fragmentary
    diagnosis and reporting. Eating disorders are often categorized by
    their most severe symptoms, including gastrointestinal problems, kidney
    failure, and loss of bone density. Early recognition and equal coverage
    by insurance carriers and managed care organizations will assure that
    the staggering costs of care for a full-blown case will be avoided.
        Large numbers of victims, for example, having lost more than 15
    percent of their ideal body weight, require extensive medical
    monitoring and treatment, often in an inpatient facility at a cost of
    $30,000 or more monthly. The cost of outpatient treatment, generally
    lasting two years or more, can exceed $100,000.
    Need to Train Health Care Professionals to Recognize and Treat Eating
            Disorders:
        Because eating disorders are complicated illnesses requiring
    multidisciplinary treatment, it is also important to educate health
    care professionals from all disciplines on the recognition and
    treatment of these illnesses. We believe it is particularly important
    to provide this training to internists, pediatricians and other health
    care professionals who are not specialists in eating disorders, because
    these are the health care professionals most likely to first come in
    contact with a person who has an eating disorder. In many cases--
    especially in managed care systems--these are also the doctors who are
    responsible for authorizing referrals and specific treatments, so it is
    critical that they know as much as possible about these illnesses.
    Research Evaluating Prevention and Self-Help Strategies:
        We also need to encourage and fund research that evaluates which
    prevention and self-help support strategies are most effective. We want
    to emphasize, however, that it is urgent to begin implementing
    promising strategies to primary prevention now. If we hold off on
    implementing primary prevention strategies until the value of each and
    every prevention strategy has been thoroughly documented, it will be
    years before we can adequately address the dangerous--and growing--
    problem of eating disorders in America.
       anad: an association of lay and professional people dedicated to
                  alleviating the problems of eating disorders
    Programs and Services:
        ANAD serves the nation, and increasingly the world, as an
    Association concerned with providing programs for the entire eating
    disorders field. Twenty-one years after its inception on March 4, 1976,
    ANAD leads the fight in the battle against deadly eating disorders with
    a multi-faceted program.
        Counsel: Through its hot-line and response to mail inquiries, ANAD
    provides counsel and information to thousands of anorexics, bulimics,
    compulsive eaters, their families, and to health professionals from all
    parts of the globe.
        Referral List: ANAD's referral list includes over 2,000 therapists,
    hospitals and clinics which treat eating disorders in the U.S., Canada
    and several other countries.
        Early Detection: This program alerts parents, teachers and the
    general public to the dangers of eating disorders and to the value of
    early detection and treatment.
        Education: ANAD distributes information about eating disorders to
    health professionals and interested people to inform them on the
    various aspects of eating disorders. Libraries, schools, universities
    and other institutions use ANAD as a resource center.
        Publicity: Through ANAD's efforts, articles on eating disorders
    have appeared in hundreds of newspapers and magazines. ANAD has
    participated in numerous national and community radio and television
    programs.
        Support Groups: ANAD assists in the formation of chapters and self-
    help groups so that victims and their families may meet others with
    similar problems. There are now chapters in 46 states and in fifteen
    foreign countries.
        National Newsletter: ANAD distributes the newsletter to tens of
    thousands of sufferers and concerned family members, health
    professionals and schools to provide educational information and an
    exchange of feelings and ideas.
        Research: ANAD research projects have helped significantly to
    increase the understanding of eating disorders in the United States,
    especially in demonstrating that anorexia nervosa, bulimia nervosa and
    compulsive eating are at epidemic levels and strike every segment of
    American society. The Association has encouraged and participated in
    numerous other research projects designed to better understand eating
    disorders.
        Insurance Discrimination: ANAD is working to halt widespread
    discrimination against the sufferers of anorexia nervosa and bulimia.
        Consumer Advocacy: ANAD has successfully prevented dangerous
    slogans such as ``You can never be too rich or too thin'' from
    appearing in national ads. ANAD continues to monitor advertisers, and
    has initiated a campaign against the sale of over-the-counter diet
    products such as diet pills, laxatives, diuretics, and emetics to
    adolescents.
        Presentation at Congressional Hearings: ANAD representatives have
    appeared at congressional hearings to testify on the dangers of
    adolescent dieting and potentially dangerous diet products, to promote
    sound governmental programs and consumer protection in the eating
    disorders field.
        Conferences/Seminars: ANAD provides national and community
    education and training conferences, seminars and lectures for health
    professionals and lay people.
        All services are free.
                       anad prevention/education programs
        A primary purpose and program thrust of the National Association of
    Anorexia Nervosa and Associated Disorders--ANAD--is to prevent eating
    disorders.
        Prevention programs are undertaken throughout the year and are
    carried through in the following manner:
      --Each year, ANAD prevention/education packets are sent to thousands
            of primary and secondary schools, colleges and universities,
            groups and associations to alert professionals, students,
            parents and other concerned people to the dangers of anorexia
            nervosa, bulimia and compulsive eating, to educate them
            regarding the symptoms of these epidemic illnesses and to
            enlist their participation in helping others to understand and
            support efforts to prevent eating disorders. Materials are sent
            throughout the United States and to several foreign countries.
      --Thousands of talks, lectures, workshops and seminars on
            understanding and preventing eating disorders are made each
            year by ANAD group leaders, trained volunteers and staff. These
            presentations are made to students, school counselors, athletic
            directors, health professionals, parent groups, professional
            associations, sororities, hospitals, etc. Hundreds of speakers
            are located in most states and in several foreign countries.
            Printed material on preventing and coping with eating
            discorders are made available to those who attend these
            presentations.
      --ANAD is represented at hundreds of health fairs each year.
      --Video tapes representing the dangers and problems of eating
            disorders are used in many lectures and workshops. These tapes
            are made by network and community companies and are used with
            their permission.
      --ANAD officers, staff, volunteers, Advisory Board members, and
            affiliated health professionals have appeared on numerous
            national and local television and radio programs directed
            toward preventing and coping with anorexia nervosa, bulimia and
            compulsive eating.
      --Through ANAD's efforts, articles warning of the destructive nature
            of eating disorders have appeared in hundreds of newspapers and
            magazines.
      --The Association actively fights against the production, marketing
            and distribution of potentially dangerous diet programs and
            diet products and the use of misleading advertising.
      --ANAD's numerous national and regional conferences and seminars
            cover extremely important issues. These meetings help train
            health professionals to treat eating disorders and lay people
            to better understand and cope with these illnesses as well as
            prevent them.
                                     ______

       Prepared Statement of the Association of American Medical Colleges
        The Association of American Medical Colleges (AAMC) Council of
    Academic Societies. The AAMC \1\--which represents all 125 accredited
    U.S. medical schools; some 400 major teaching hospitals; 86
    professional and academic societies, representing 87,000 faculty
    members; and the nation's medical students and residents--appreciates
    this opportunity to comment on the fiscal year 1998 appropriations for
    the National Institutes of Health (NIH), the health professions
    education programs funded through the Health Resources and Services
    Administration, and the Agency for Health Care Policy and Research
    (AHCPR). The AAMC thanks the Subcommittee for its continued support of
    these programs.
    ---------------------------------------------------------------------------
        \1\ For fiscal years 1994-96, the AAMC received $2,385,000 in
    Federal funding from the National Institutes of Health and the Health
    Resources and Services Administration.
    ---------------------------------------------------------------------------
    Medical Research
        The Federal Government, through the NIH, plays a unique and vital
    role in the support of this nation's biomedical and behavioral research
    efforts. This investment has provided, and continues to yield, the
    abundance of fundamental and applied biological and biomedical
    knowledge that fuels the advances in the practice of medicine that have
    distinguished the United States globally. NIH-supported research
    continues to make enormous contributions to improving the health and
    quality of life for all Americans.
        In addition, NIH-sponsored research has made significant economic
    contributions, both locally and nationally. Research conducted and
    supported by the NIH played a major role in the development and
    continues to provide the basis for much of the sustained success of the
    biotechnology, pharmaceutical, and medical device industries.
        Still, America faces serious health problems and new threats
    constantly appear. Congressional support of biomedical and behavioral
    research has produced a wealth of scientific opportunities to answer
    these challenges. A testimony to the abundant opportunities available
    is the NIH Director's professional judgement budget, which calls for a
    9 percent funding increase in the coming fiscal year.
        For fiscal year 1998, the AAMC endorses the recommendation of the
    Ad Hoc Group for Medical Research Funding that the NIH budget be
    increased by 9 percent, as proposed by the NIH Director in his
    professional judgement budget. The AAMC and the Ad Hoc Group believe
    that this budget represents the best and most reliable estimate of the
    level of funding needed to sustain the high standard of scientific
    achievement embodied by the NIH.
        Within the NIH budget, the AAMC has three major areas of concern.
    First is peer-reviewed, investigator-initiated basic research, which is
    supported primarily through research project grants. Basic research is
    the heart of the NIH. Without these inquiries into the fundamental
    cellular and molecular events of life real, progress toward conquering
    disease is unlikely. Funding for new research project applications is a
    particularly critical issue. The innovative ideas proposed in such
    applications drive medical progress. There is consensus within the
    research community that the NIH should fund approximately 35 percent of
    meritorious research project grant applications. A 9 percent increase
    in funding in fiscal year 1998 would enable the NIH to achieve this
    goal.
        Support for clinical research is the second area of concern. The
    knowledge gained through fundamental research is only part of the
    solution. It is the application of this knowledge to clinical problems
    in the diagnosis, treatment, and prevention of disease that ultimately
    fulfills the mission of the NIH. Clinical research not only furthers
    the application of basic research findings, but often provides
    important leads to identify further basic research opportunities. In
    recent years, NIH funding for clinical research activities has not kept
    pace with available research opportunities or with current health
    needs.
        One area of clinical research activity that is of particular
    interest to the AAMC is the General Clinical Research Centers (GCRC)
    program, which supports clinical research centers at university-based
    hospitals throughout the country. GCRCs provide infrastructure to
    academic institutions through the support of inpatient and outpatient
    research facilities and other resources crucial to state of-the art,
    patient-oriented research. The network of GCRCs also provides an
    effective locus for training and career development in clinical
    research.
        The third area of concern is the institutional research
    infrastructure: the resources and personnel at the medical schools,
    teaching hospitals, and other research institutions, that enable NIH-
    supported research to thrive. The GCRC program is an example of the
    infrastructure support provided by the NIH's National Center for
    Research Resources (NCRR). The NCRR is a critical component of the NIH,
    assuring that the programs of the disease-oriented institutes will have
    the essential elements of a vigorous research environment. The NCRR
    provides state-of-the-art instrumentation, advanced technologies,
    essential animal and non-animal models and resources, and comprehensive
    support for clinical research.
        In addition, NCRR programs emphasize shared resources, which
    promote the efficient use of scarce Federal research dollars. These
    programs encourage interactions among scientists, which stimulate
    interdisciplinary efforts. By providing new research technologies and
    providing shared resources, the NCRR enhances the productivity of the
    Federal-academic research partnership. Therefore, the AAMC urges the
    Subcommittee to pay particular attention to the needs of the National
    Center for Research Resources.
        There is growing concern about the ability of medical schools and
    teaching hospitals to sustain their research mission. The
    transformation of the health care system to a market-driven, price-
    competitive structure poses a significant threat to the fiscal
    stability of medical schools and teaching hospitals and their ability
    to maintain an environment for research and innovation. To address many
    of the unmet needs caused by these increasing fiscal constraints, the
    AAMC strongly urges the Congress to review the history of the
    Biomedical Research Support Grant (BRSG) program as a potential model
    for a program of flexible institutional support. The BRSG program
    evolved from legislation, enacted in 1960, to provide flexible funds to
    strengthen and stabilize NIH-supported research programs.
        The fundamental rationale for the BRSG Program--that effective
    health research requires a strong institutional base of support--is
    even more important in the current unstable environment than it was in
    1960. The financial structure of medical schools and teaching hospitals
    is heavily dependent on clinical revenues and other forms of
    contributed support made possible by payments for patient care
    services. There is a growing, pervasive sense that changes in the
    health care marketplace are endangering this base of support.
        A flexible institutional support program would fund biomedical
    research needs not served by other programs. The program should allow
    NIH-grantee institutions to exercise on-site judgment regarding
    emphasis, specific direction, and content of activities supported, thus
    enabling the institutions to respond quickly and effectively to
    emerging opportunities and unpredictable requirements, to enhance
    creativity, to encourage innovation, to provide for pilot studies, and
    to improve research resources, both physical and human. Such a program
    would provide flexible biomedical research support to fund new
    investigators, explore new and unorthodox research ideas and
    techniques, respond promptly to opportunities that develop in the
    course of active research programs, and provide central shared
    resources.
    Health Professions Education
        The geographic and specialty maldistribution of physicians in the
    United States are critical issues facing both the Congress and the
    nation. The National Health Service Corps (NHSC) and the health
    professions education programs authorized under Titles VII and VIII of
    the Public Health Service Act are designed to play a major role in
    addressing these problems.
        The NHSC was established to assist in the recruitment of primary
    care health professionals for service in shortage areas. In the 1990s,
    the Corps has seen an overdue but welcome increase in funding, reaching
    a highpoint in fiscal year 1994 with $126.7 million. However, more
    recently, funding has been decreased to $115.4 million in fiscal year
    1997. As a result, the Corps, which made a total of 259 physician
    awards in 1993-4, could only support a total of 180 physicians in 1996-
    7. Since the NHSC plays an important role in redressing the geographic
    imbalance in physician distribution, the AAMC urges the Subcommittee to
    increase funding for the NHSC to at least $127 million in fiscal year
    1998.
        The AAMC thanks the Subcommittee for restoring funding in fiscal
    year 1997 for the Title VII and VIII health professions and nursing
    education programs to the fiscal year 1995 pre-rescission level of $293
    million. The AAMC joins the more than 40 national organizations of the
    Health Professions and Nursing Education Coalition (HPNEC),
    representing a variety of schools, programs, and individuals dedicated
    to educating professional health personnel, in urging the Subcommittee
    to continue its support of the Titles VII and VIII programs by
    providing no less than $302 million for fiscal year 1998. This
    represents a 3 percent inflationary increase in the fiscal year 1997
    funding level.
        The Title VII programs are designed to meet the nation's needs for
    an expanded supply of primary health care providers, improve the
    geographic distribution of health professionals, and increase access to
    health care in both urban and rural under served areas. Within Title
    VII, three programs provide support to medical schools and teaching
    hospitals for planning, developing, and operating programs that
    emphasize the education of students and residents in generalist
    medicine. The AAMC urges the Subcommittee to provide an appropriate
    level of support for these three programs: general internal medicine
    and general pediatrics residencies, family medicine training, and
    preventive medicine residencies.
        The AAMC also recommends continued support for geriatric education
    centers and geriatric training programs for physicians and other health
    professionals. These centers were created to provide physicians and
    other health professionals with the skills necessary to care for the
    growing number of elderly Americans. Support for geriatric training
    must keep pace with the rising demand for specialized services
    necessary to care for an aging population.
        Title VII also provides grants for the creation and operation of
    area health education centers (AHECs) and health education and training
    centers (HETCs). These programs provide clinical training opportunities
    for medical students and residents in predominately rural settings by
    extending the resources of academic health centers to communities in
    need of health care and health education. Through these linkages, AHEC
    projects, which eventually become state- or self-supported, form
    networks of institutions that simultaneously provide health care to
    underserved populations and educational services to students, faculty,
    and practitioners. The AAMC urges the Subcommittee to continue its
    commitment to AHECs and HETCs, which exemplify the synergies possible
    in well-crafted federal-state and public-private partnerships.
        As medical schools continue with the AAMC's Project 3000 by 2000
    initiative, several Title VII programs assist toward the Project's goal
    of matriculating at least 3,000 underrepresented minority students in
    medical schools by the year 2000 and each year thereafter. Grants made
    to medical schools under the Health Careers Opportunity Program (HCOP)
    are used to identify and recruit disadvantaged students, facilitate
    their entry into medical school, and help them complete their
    education. The Centers of Excellence program extends grants to health
    professions schools for the establishment and expansion of programs to
    enhance the academic performance of minority students. The AAMC hopes
    the Subcommittee's funding recommendations will recognize the crucial
    support these two programs provide to efforts in recruiting and
    retaining qualified minority medical students.
        In addition, Title VII includes four loan and scholarship programs
    that assist needy and disadvantaged medical students in covering the
    costs of their education: the Exceptional Financial Need scholarship;
    the Financial Aid for Disadvantaged Health Professions Students
    scholarship; Scholarships for Disadvantaged Students; and Loans for
    Disadvantaged Students programs. The AAMC hopes the Subcommittee will
    recommend funding for these programs that is sufficient to help poor
    and otherwise disadvantaged students overcome the financial barriers
    they face in pursuing their medical education.
    Agency for Health Care Policy and Research
        A fervent drive to cut health care costs, coupled with fierce
    competition among all sectors of the delivery system, characterize the
    current health care market place. While these market trends have
    resulted in reductions in the rate of increase of health care
    expenditures, many experts have concerns about the impact on quality
    and appropriateness of care and the choices available to consumers.
        The Agency for Health Care Policy and Research (AHCPR) directly
    responds to these concerns. AHCPR is charged with sponsoring health
    services research designed to improve the quality of health care,
    decrease health care costs, and provide access to essential health care
    services. The agency works in partnership with other federal agencies
    and private organizations to support research, clinical guideline
    activities, and the development of quality measurements that bring
    practical science-based information to medical practitioners,
    consumers, and other health care purchasers.
        The AAMC believes strongly in the value of health services research
    as this nation continues to strive to provide high-quality health care
    to all of its citizens. The AAMC endorses the Friends of AHCPR
    recommendation of a fiscal year 1998 funding level of $160 million for
    AHCPR. We urge the Subcommittee to appropriate the necessary funds to
    allow this agency to sustain its current activities and to continue to
    advance its mission through new initiatives.
        However, the AAMC urges the Subcommittee to limit the transfer of
    funds to AHCPR from the so-called one percent evaluation set-aside in
    the Public Health Service. This transfer of appropriated funds to AHCPR
    causes a certain amount of difficulty in other Public Health Service
    agencies, particularly the NIH, as the level of transfers increases. In
    fiscal year 1997 thirty-three percent of AHCPR's budget was derived
    from other PHS agencies. The President's fiscal year 1998 budget raises
    the portion of transferred funds to forty-two percent. The AAMC
    recommends that funding for the agency should be provided directly
    through the regular appropriations process.
        AHCPR's budget includes a number of projects designed to improve
    health care quality in a changing health care environment. For example,
    the Research on Health Care Outcomes and Quality Program supports
    inquiries into the development of fair and consistent quality measures.
    These measurements are used in quality management activities to
    determine whether a particular treatment has the desired effect. To
    this end, AHCPR partnered with the Center for Health Policy Studies of
    Columbia, Maryland and the Harvard School of Public Health in the
    Measurement Typology Project to develop a prototype for measuring
    clinical quality. AHCPR's fiscal year 1998 budget contains $5 million
    for projects designed to develop new measures of health care quality
    where needed and strengthen the linkage from performance measurement to
    clinical quality improvement.
        To improve clinical practice, AHCPR has re-focused its efforts in
    the development of clinical practice guidelines. The agency will
    continue its efforts in this area by supporting evidence-based practice
    centers to assemble evidence reports on various health conditions.
    These evidence reports will be designed to assist provider societies,
    managed care organizations, purchasing groups and others to produce and
    implement their own clinical practice guidelines and other quality
    improvement efforts.
        Finally, the AAMC continues to support the activities of the
    Physician Payment Review Commission and the Prospective Payment
    Assessment Commission. These organizations provide extensive data
    collection and analytical capabilities that we believe greatly inform
    the policy-making debate in their respective areas. As Congress
    continues to address issues in health care, the expertise and unique
    abilities of these two organizations are valuable national resources
    that should be preserved.
        The AAMC appreciates the continued support the Subcommittee has
    given these programs. We emphasize again their critical importance and
    look forward to working with the Subcommittee members and staff to
    achieve their implementation.
                                     ______

           Prepared Statement of the American College of Rheumatology
    Arthritis Research at the National Institutes of Health (NIH)
        The American College of Rheumatology is an organization of
    physicians, health professionals and scientists that serves it members
    through programs of education, research and advocacy that foster
    excellence in the care of people with arthritis, rheumatic and
    musculoskeletal diseases. We are pleased to have the opportunity to
    provide our views concerning fiscal year 1998 funding for the National
    Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
    and the National Institute of Allergy and Infectious Diseases (NIAID)
    within the NIH.
        As we look toward the end of the century, the ``baby boomer''
    generation is approaching the stage of life when having arthritis
    becomes commonplace and the importance of nonfatal conditions (such as
    arthritis) is the major factor determining the health of the
    population. No condition impairs the quality of life of more older
    adults--and does so to a greater extent--than does arthritis. In the
    elderly population, there is an increased likelihood that an individual
    will have two or more chronic conditions, and there is an association
    between the number of conditions present in one person and the
    occurrence of disability. The provision of care to people who are
    disabled contributes significantly to the financial costs paid by the
    government, private insurers, and to society as a whole; and this is
    expected to increase in the decade ahead.
        Arthritis means swelling, pain and loss of motion in the joints of
    the body. There are more than 100 diseases that cause this condition.
    These diseases are typically chronic--causing life-long pain and
    disability. These diseases are also very common and extremely costly.
    Although some forms of arthritis are predominant in older individuals,
    arthritis also affects children and adults of all ages.
      --Arthritis ranks number 1 among the ten leading health problems of
            individuals age 50 and older.
      --One in 7 Americans has some form of arthritis; by the year 2020, it
            is expected that this will increase to one in 5.
      --Total costs of all types of arthritis and related diseases amount
            to about $55 billion each year.
        Through increased investment in research, better treatments and
    management strategies can be developed which will lead to reduced
    costs, and improvements in the quality of life for individuals with
    these diseases. Our ability to take advantage of this opportunity will
    become increasingly important as arthritis and related diseases become
    more prevalent in our nation's aging population.
        Recent advances in many different fields (including immunology,
    genetics, infectious diseases, cartilage biology and gene regulation,
    for example) have brought scientists to the edge of numerous
    breakthroughs that will be important in our understanding and treatment
    of many different forms of arthritis. For example, the NIAMS has
    initiated a multi-pronged approach to understand and treat
    osteoarthritis (OA). OA can be caused by a variety of genetic,
    biochemical, and biomechanical factors, but the precise mechanisms by
    which these various factors cause disease are unknown. Recent research
    results have provided some fascinating clues to help understand and
    develop approaches to osteoarthritis.
        For the first time, scientists have zeroed in on the location of a
    gene that predisposes people to systemic lupus erythematosus (SLE, or
    Lupus), a chronic autoimmune rheumatic disease. Researchers have
    localized the gene to a region near the end of the long arm of human
    chromosome 1 in Caucasians, Asians and African Americans with lupus.
    Identifying genes for lupus will provide new insights as to why people
    get the disease, and should help researchers develop new treatments or
    preventive measures.
        Researchers have identified six distinct regions that control
    inflammatory arthritis in rats. Through genetic analysis of rats with
    different disease susceptibilities and severity, the researchers found
    that the genetic basis in the inflammatory arthritis bore a striking
    similarity to what is known about genetics of rheumatoid arthritis. To
    gain further insight into possible causes of rheumatoid arthritis and
    other autoimmune diseases, a comprehensive study is being undertaken
    via a national project involving 800 sibling pairs affected with
    rheumatoid arthritis.
        Rheumatoid arthritis, systemic lupus erythematosus, Sjogren's
    syndrome, and perhaps scleroderma fall within the category of
    autoimmune disease. All are potentially devastating chronic diseases
    which exact a huge toll in human suffering and economic costs. Because
    many of these diseases affect women, basic studies will be conducted to
    increase our understanding of the ways in which gender influences the
    development of autoimmune diseases and the regulation of immune
    responses in people with these diseases.
        The ACR recommends an appropriation for the National Institute of
    Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of $280 million
    for fiscal year 1998.
        Arthritis research is also supported by the National Institute of
    Allergy and Infectious Diseases (NIAID). We therefore support a
    sufficient increase in funding for NIAID for fiscal year 1998 so that
    continued emphasis on arthritis research can be maintained. Overall,
    the ACR joins the Ad Hoc Group for Medical Research Funding in
    supporting at least a 9 percent increase for NIH as a whole, to bring
    funding to a level of $13.9 billion for fiscal year 1998.
        Another area of concern to us is support for training new
    scientists. The ACR believes that there is an overwhelming need to
    provide for the renewal and expansion of the intellectual capital that
    is essential to the research enterprise. When the likelihood of an
    approved research grant proposal being funded declines, the brightest
    young scientists become discouraged from pursuing research careers--
    something this country can ill-afford. Steps must be taken now to
    increase the grant success rate, in order to actively encourage new
    scientists to undertake, and remain in, research careers.
        Discussion of medical research opportunities and the emerging
    health care needs of an aging nation is properly a part of the national
    political debate. Even at a time when policymakers are locked in
    disagreement over the role of the government in our daily lives, there
    is broad consensus that the federal government must continue to invest
    in biomedical research. Americans understand that NIH-supported
    research saves lives, saves dollars, and stops human suffering.
        In a 1995 public opinion poll conducted by Louis Harris &
    Associates for Research America!, a strong majority of citizens opposed
    cuts in federal support for medical research. Ninety-four percent of
    those surveyed believed that it is important that the United States
    maintain its role as a world leader in medical research. The survey
    also showed that medical research takes second place only to National
    Defense for tax dollar value. Overall, we believe that the results of
    this poll mean that the importance of research funding directed to
    chronic conditions such as arthritis, as it relates to savings in
    national health care costs is recognized by most citizens.
        Arthritis research is cost-effective.--While arthritis and related
    diseases cost our nation more than $55 billion each year, we have the
    potential to reduce the costs through research. For example, a new drug
    therapy for kidney disease resulting from lupus has been found to save
    between $90 and $120 million per year in health care costs in the U.S.
    This is all the more impressive since this drug regimen cost only about
    $12 million to develop. Thus, nearly a ten-fold return is being reaped
    by this investment in research. The use of long-term estrogen/
    progestogen replacement therapy for certain postmenopausal women, has
    resulted in significant reductions in instances of osteoporotic
    fractures, which amount to a savings of over $300 million per year in
    patient care costs and lost wages.
        These are only two examples. If our federal commitment can be
    strengthened, biomedical research will continue to yield improvements
    in treatment for patients and better management strategies. As such
    advances are made, costs of insurance and other costs borne by the
    government--including costs associated with long-term care and worker's
    compensation--will significantly decline. If our federal investment in
    arthritis research is increased, Members of Congress can feel confident
    that research progress is being made in disease prevention so that
    fewer resources will be needed to support disability care of our aging
    population.
        In addition, long-term positive outcomes were achieved in
    chronically ill patients who participated in the NIAMS-sponsored
    Arthritis Self-Management Program. The Program improved patients'
    perceptions of their own self-efficacy. Unrelated to perception of
    level of pain, these improvements nonetheless reduced the frequency of
    doctor visits by at least once a year, on average. Extrapolated to all
    patients with arthritis, this program could represent a significant
    savings in health care costs attributable to office visits.
        Arthritis research provides economic stimulation.--NIH-supported
    research is largely responsible for the growth of the American
    biotechnology and pharmaceutical industries. One study has shown that
    sales of biotechnology products can be expected to increase more than
    ten-fold to over $50 billion in the decade of the 90's. In fact,
    American firms dominate most of the businesses that employ leading edge
    technologies, (including pharmaceuticals and biotechnology) according
    to recent economic findings. Although this is good news, investment in
    these areas by the federal government must be maintained--and
    increased--if we are to expect the ``public-private partnership'' to
    continue to yield such results. This is especially important in terms
    of investment in the basic research that serves as a necessary
    ``precursor'' for clinical research on drugs, and vaccine development,
    and in developing new treatments that directly benefit patients.
        Arthritis research improves people's lives--Almost fifty million of
    our nation's citizens must face, every day, a variety of limitations
    due to reduced mobility and function, as well as interrupted social
    lives, and depression which may occur due to these illnesses. While it
    is difficult for those of us blessed with good health to comprehend
    fully the implications of arthritis and related diseases, it is obvious
    that the advances in treatment that are made possible by federal
    funding for arthritis research do indeed mean the difference between
    illness and health; between disability and function; and between
    dependence and self-sufficiency for affected individuals and their
    families.
    Health Care Delivery Research at the Agency For Health Care Policy and
            Research (AHCPR):
        The ACR has long been concerned about the need for research
    focusing on the organization and delivery of medical care. The Agency
    For Health Care Policy and Research (AHCPR) generates and disseminates
    information that improves the delivery of health care. AHCPR's research
    goals are to determine what works best in clinical practice; improve
    the cost-effective use of health care resources; help consumers make
    more informed choices; and, measure and improve the quality of care.
    AHCPR has been designated lead agency in the Department of Health and
    Human Services for the Secretary's initiative to improve health care
    quality, a recognition of the Agency's leadership role in this area.
        Private market forces have acted to transform the country's medical
    care system. Major trends include cost cutting, increasing competition
    within and among all sectors of the delivery system, and continuing
    consolidation of providers and payers. While these trends have resulted
    in reductions in the rate of increase of health care expenditures, they
    have also raised questions about the impact on the quality and
    appropriateness of health care and the choices available to consumers.
    AHCPR is supporting a collaborative project with the managed care
    industry to explore how organizational and financing variables within
    managed care affect quality of care and disease specific medical
    outcomes for chronic conditions. We should acknowledge that simply
    knowing what works and at what cost does not automatically translate
    into improved practice. The singular contribution of AHCPR-supported
    research is that it focuses specifically on how to achieve improvements
    in practice in typical practice settings. AHCPR is currently soliciting
    priorities for outcomes research from consumers, providers, health
    plans, purchasers and researchers to guide the next phase of research
    in outcomes and cost-effectiveness for clinical conditions.
        The conference report on the fiscal year 1997 Labor-HHS-Education
    Appropriations bill (S. Rpt 104-368) directed AHCPR to study potential
    cost-savings derived from direct patient access to specialists. The ACR
    looks forward to seeing the results of research that we expect will
    show the outcome and cost benefits of direct access to rheumatologic
    care for people with arthritis and related disorders. The rapid changes
    in the health care system have created a critical need to understand
    what works best in the organization, financing, and delivery of health
    care. Based on our belief that AHCPR-supported research can provide
    these answers, ACR joins with the Friends of AHCPR in supporting
    funding AHCPR at $160 million for fiscal year 1998. This is $16 million
    over the fiscal year 1997 level, but approximately equal to the level
    at which the Agency was funded in fiscal year 1995.
    Conclusion
        As providers of health care to the millions of Americans who have
    arthritis and related diseases, we hope we have given Congress some
    insight in its effort to answer an important question about
    investment--one that individuals ask themselves as they weigh their own
    investments, although on a larger scale: What investment reaps the
    biggest ``bang for the buck?'' We acknowledge that federal dollars can
    always be dumped into remedial measures and into federal subsidies for
    an increasing disabled and dependent population. There is a better way,
    however, through a strengthening of our nation's commitment to
    biomedical and health services research. The ACR commends the
    subcommittee for doing just this in past years, and we urge you to
    continue the good work that you do in recognizing our citizens' health
    needs.
                                     ______

                 Prepared Statement of the Arthritis Foundation
        The Arthritis Foundation appreciates the opportunity to submit
    public witness testimony in support of fiscal year 1998 appropriations
    for the National Institutes of Health and the Center for Disease
    Control and Prevention.
        The Arthritis Foundation is a national, voluntary health
    organization that works on behalf of the nearly 40 million people
    affected by any of the more than 100 forms of arthritis or related
    diseases. Our primary mission is to support research to find a cure for
    and prevention of arthritis, advance professional and community
    education about the disease, and provide services for those afflicted.
    Prevalence and Cost
        Arthritis is the leading cause of disability in the United States,
    severely disabling over 7 million Americans. It disproportionately
    afflicts women, with 60 percent more cases in women than in men. Over
    the next 25 years, as the population ages and as people live longer,
    the prevalence of arthritis is expected to increase by about 12 million
    for a total of 60 million by the year 2020. It is estimated that the
    annual cost of arthritis alone is $64.8 billion in medical care and
    lost wages. Musculoskeletal diseases account for another $61.4 billion
    in medical care and lost wages, for a total of more than $126 billion.
    As arthritis and related diseases effect older Americans with much
    greater frequency than the young, the cost to the Medicare program is
    staggering.
        Certainly, the economic consequences of the disease make prevention
    and finding a cure particularly important. But, even more debilitating
    is the physical toll arthritis takes on its victims. Arthritis leaves
    you with increasingly debilitating mobility and severe pain. It
    severely limits and restricts everyday activities such as dressing,
    climbing stairs, walking, or even getting in or out of bed.
        Arthritis manifests itself as pain, stiffness and often swelling in
    and around joints. Osteoarthritis, the most common form of arthritis,
    is characterized by the breakdown of cartilage and bones in the fingers
    and weight-bearing joints. Affecting over 16 million people, 12 million
    of whom are women, this disease accounts for more than half of all
    total hip replacements and 85 percent of all total knee replacements.
        Other common forms of arthritis all of which occur more frequently
    in women than in men include fibromyalgia, a form of arthritis in
    muscles surrounding joints which affects five million people, and
    rheumatoid arthritis, an immune-related inflammation or swelling of the
    joint lining that damages cartilage and bone, appearing most often in
    20-50 year olds. Arthritis can also take the form of gout, lower back
    pain, bursitis, systemic lupus, and juvenile rheumatoid arthritis.
    Targeting the Effects of Arthritis
        According to a study by the Centers for Disease Control and
    Prevention (CDC), six million people believe that they may have
    arthritis, but have never consulted a physician (even though more than
    75 percent of them saw a physician for other problems). Part of the
    reason for the delay in seeking treatment may be attributable to
    misconceptions about the availability of treatment--in an interview of
    patients with musculoskeletal conditions, 40 percent thought that
    nothing could be done for them. Clearly, we must do a better job of
    getting the message out and of reaching everybody who needs our
    assistance.
        To this end, the Arthritis Foundation requests that $2 million be
    provided through the CDC in 1998 so that the full dimensions of the
    problems of arthritis can be more accurately understood and that the
    needs of all people with arthritis can be better served. With
    additional resources, the CDC can conduct enhanced surveillance
    activities, especially in minority populations; it will be able to
    support special studies to characterize risk factors and design
    appropriate interventions; it will be able to work with state health
    departments, academic institutions, and voluntary organizations to
    evaluate the cost-effectiveness and the dissemination of existing
    interventions; and it will be able to evaluate how managed care affects
    the long-term costs and health of individuals with arthritis.
    NIAMS
        With this Committee's tremendous support and leadership, we have
    accomplished much in the past ten years toward relieving the burden of
    arthritis, through Congressional support of the National Institute of
    Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Among recent
    biomedical, technological, and research accomplishments, scientists and
    researchers have:
      --located a gene that predisposes people to lupus, a chronic
            autoimmune rheumatic disease, which should help researchers
            develop new treatments and preventions;
      --gained a better understanding of implant wear, making joint
            replacement surgery more feasible for younger people;
      --identified six distinct regions that control inflammatory arthritis
            in laboratory rats which built the foundation for human
            research with 800 sibling pairs affected with rheumatoid
            arthritis; and,
      --conducted the first gene therapy trial for rheumatoid arthritis.
        Important technological advances include those on monoclonal
    antibodies, genetic engineering, new animal strains, the ability to
    manufacture large amounts of genetic materials from small pieces, and
    magnetic resonance imaging giving a better ``view'' of joint structure.
    Recent research has also shown an association of genetic factors with
    juvenile arthritis, Lyme disease, and osteoarthritis; improvements in
    joint replacements through advances in computer measuring, prosthetic
    devices, and adhesives; and new applications for existing drugs as
    treatments for arthritis.
        These and many other advances in arthritis research would not have
    occurred without the strong commitment to biomedical and behavioral
    research that Congress has provided. However, many exciting and
    promising research opportunities remain unfunded, including further
    research on arthritis in children and genetic therapy by immunization
    for rheumatoid arthritis to name but two.
        Researchers hope to improve their understanding of arthritic
    diseases through the development of new plastics and adhesives that
    will lead to even greater surgical success and improved protheses as
    well as thorough identification of ``triggers'' for those at high risk
    for arthritis and the means to minimize its chronic effects. Other
    potentially promising research includes identifying gene(s) for
    different types of arthritis and genetic engineering to replace
    defective DNA.
        The Arthritis Foundation respectfully requests $280 million for
    NIAMS for fiscal year 1998, a 9 percent increase over the 1997
    appropriation. The success rate for NIAMS in fiscal year 1997 is
    estimated to be only 21 percent, compared to 28 percent for all of NIH.
    This level of support would enable NIAMS to support more of the
    meritorious grant applications that it receives and to continue to find
    ways to control, cure, and ultimately prevent arthritis.
        We thank you again and we urge you to continue to provide
    leadership and strong support for NIH, NIAMS, and CDC.
                                     ______

     Prepared Satement of the College on Problems of Drug Dependence, Inc.
        The College on Problems of Drug Dependence (CPDD) is pleased to
    submit public witness testimony to urge your continued support of the
    National Institutes of Health (NIH), the National Institute on Drug
    Abuse (NIDA), and the Substance Abuse and Mental Health Services
    Administration (SAMHSA). CPDD is the nation's longest standing
    organization that addresses the problems of drug dependence and drug
    abuse and we are the leading scientific society in the field of drug
    dependence research.
    National Institute on Drug Abuse
        First, the members of CPDD wish to thank you for the tremendous
    support and leadership you have provided during the last two years. We
    know that your subcommittee was faced with many difficult funding
    decisions for many worthy programs, and we sincerely appreciate the
    funding increases for the NIH for 1996 and this year.
        Every Member of this distinguished Subcommittee, indeed, every
    Member of Congress, is aware of the recently reported increase in drug
    use among our nation's children. Of particular concern is the dramatic
    increase among our very young, including pre-teens. The message we
    bring to you today is that, while some drug use is on the rise, we must
    remember that drug abuse in fact is a preventable behavior. Drug
    addiction is a social problem and a legal problem. But it is also a
    health problem. We believe that part of the explanation for the rise in
    the use of marijuana lies in the weakening of our resolve to implement
    the best prevention and treatment programs that research shows can
    work.
        The scientific opportunities that exist, if adequately supported,
    can help find solutions to drug abuse and addiction. We are extremely
    appreciative of the Administration's proposed $33 million increase for
    NIDA, which we believe indicates the President's awareness and concern
    about this complex public health problem, and we are optimistic that
    the NIDA budget request will support the research that is needed to
    determine the most effective prevention and treatment programs. We know
    that drug addiction is a treatable disease. We also know that treatment
    is cost effective. According to a 1994 Rand Corporation study, $34
    million invested in treatment reduces cocaine use as much as $783
    million for source-country programs or $366 million for interdiction.
        It is important for Congress to recognize that what we really need
    in order to produce significant and long lasting changes in illegal
    drug use is more research. We have learned a lot about the causes of
    drug abuse, and our latest treatment advances reflect some of that
    knowledge. Some of what leads people to abuse drugs is inherited from
    their parents. Availability of drugs is also an important determinant
    of initial use, but much less important to addicts, who will do
    whatever it takes to obtain drugs. Something happens to the brains of
    people who use drugs regularly. We are learning a tremendous amount
    about this, taking advantage of some of the latest techniques from the
    neurosciences. Drug abuse research is coming of age. NIDA was
    established just over two decades ago. It funds virtually all drug
    abuse research in the United States and more than 85 percent of all
    drug abuse research worldwide. There is little pharmaceutical industry
    research in this area. Few foundations support any basic research and
    few other governments do either. The problem of inadequate support for
    drug abuse research has been recognized by Office of National Drug
    Control Policy (ONDCP) Director General Barry McCaffrey and the
    proposed $33 million increase for NIDA is part of the President's
    National Drug Control Strategy. We do not want to sound alarmist, but
    scientists know that there are new, even more powerful drugs than
    heroin and cocaine that could become a problem for us in the near
    future. The recent outbreak of abuse of methamphetamine is an example
    of this. We must be scientifically equipped to meet not only the
    challenges of the day, but those of tomorrow.
        Great strides are being made in understanding the causes of drug
    abuse, and the scientific community is well aware of the excellence of
    research supported by NIDA. Researchers now have the ability to show in
    detail what drugs are actually doing to and in the brain--we can
    actually visualize as it happens where drugs are binding in the brain.
    We have discovered the specific brain circuits involved in drug use and
    we are beginning to unveil the changes in activity patterns in these
    circuits during the processes of addiction and withdrawal. Researchers
    have identified the genes for the receptor sites for practically every
    illegal substance. The next step is to develop new addiction
    medications.
        To build upon these and other past breakthroughs and to exploit the
    opportunities that exist, CPDD recommends additional research in the
    following broad areas:
      --Increase basic drug abuse research. The explosion of new
            information in neuropharmacology and other neurosciences has
            the potential to provide major breakthroughs in drug abuse
            treatment and prevention. We need to better understand the role
            of heredity and other sources of individual differences as risk
            factors for drug abuse. We also need additional information on
            the harmful effects of acute and chronic exposure to drugs of
            abuse.
      --Maintain and expand our knowledge of trends in drug abuse
            practices. Continued support is needed for large scale surveys
            that provide an informed public policy. We need better access
            to existing data, which would facilitate our understanding of
            drug abuse and its consequences; we need improved methods for
            obtaining scientific data on newly emerging drug abuse
            problems; and we need to support more long-term prospective
            studies on risk factors that co-vary with the development of
            drug abuse problems.
      --Increase research on the effectiveness of drug abuse prevention and
            public policy initiatives aimed at reducing demand for drugs
            among our youth. Programs such as DARE and Safe and Drug Free
            Schools have been widely implemented but have not been
            sufficiently evaluated. Additional research is also needed on
            prevention programs for high risk youth.
      --Increase research on the development of new drug abuse treatments
            and on the evaluation of existing treatments. Improved
            treatment strategies that combine the use of medications and
            behavioral treatments are needed, as are new treatments that
            reduce relapse. We also need additional evaluations of
            treatment effectiveness for special populations. For example,
            what are the best ways to link drug abuse treatment to the
            criminal justice system, in order to take maximal advantage of
            the leverage of criminal sanctions?
      --Increase research on the relationship between drug abuse and the
            transmission of AIDS. We need a better understanding of how
            drugs alter the likelihood of risk-taking behaviors that
            increase HIV transmission since an estimated one-third of HIV
            cases result from drug use, and we need improved treatments
            targeted to the abuse of drugs by persons who are infected with
            the HIV virus. Further, we need a better understanding of the
            effects of drug abuse on the immune system in order to better
            prevent and treat AIDS and its associated opportunistic
            infections.
    Substance Abuse and Mental Health Services Administration
        The research dissemination and training programs of the Substance
    Abuse and Mental Health Services Administration (SAMHSA) are also an
    essential part of our national drug abuse treatment and prevention
    strategy. We are especially supportive of the training and
    demonstration grant functions of the Center for Substance Abuse
    Treatment (CSAT) and the Center for Substance Abuse Prevention (CSAP).
        Much more needs to be done to determine the feasibility of
    implementing NIDA-supported research advances in clinical environments.
    There is a tremendous gap between what is known about prevention and
    treatment effectiveness and what is actually being done in many
    communities. We need more research on the barriers to the
    implementation of effective new treatment and prevention programs. The
    treatments and the prevention strategies that emerge from NIDA-
    supported research require community-based programs to evaluate their
    effectiveness. CSAT and CSAP demonstration grants provide a critical
    link between research and its implementation. Furthermore, SAMHSA
    training programs are needed to insure that counselors, educators, and
    other professionals have the necessary knowledge of new advances in the
    field. The large cut that these programs experienced in fiscal year
    1996 have severely curtailed their effectiveness.
    Funding Request
        We hope that Congress will be able to provide an increase for NIH
    over the Administration's Budget Request. If this occurs, we request an
    increase of $48 million over the fiscal year 1997 appropriation to
    ensure that NIDA maintains the priority status that it received in the
    President's Budget. We are confident that this would be effectively
    used given the scientific opportunities that exist. For SAMHSA, we do
    not have a specific recommendation but we request that adequate support
    be provided for the demonstration and training programs supported by
    CSAT and CSAP.
        Thank you for your consideration of our request.
                                     ______

                   Prepared Statement of the FDA-NIH Council
    Introduction
        Mr. Chairman, Members of the Committee, thank you for the
    opportunity to present a statement to the Committee as you deliberate
    funding priorities for fiscal year 1998.
        The FDA-NIH Council is a coalition of 24 organizations comprised of
    patient advocates, academic scientists, health professionals, and
    medical research-based corporations. These partners in the process of
    medical discovery and innovation have come together to seek common
    ground in addressing the complex challenges the Food and Drug
    Administration (FDA) and the National Institutes of Health face. The
    Council appreciates the opportunity to submit testimony concerning the
    importance of a sustainable, predictable funding base for the National
    Institutes of Health (NIH). In past years, this Committee has been
    vitally important in addressing the funding needs of the NIH, and we
    are grateful for your support of the agency.
        Before I address the issue of the funding for the NIH, please allow
    me to make a few comments about my own organization. Glaxo Wellcome is
    a research-based company whose people are committed to fighting disease
    by bringing innovative medicines and services to patients throughout
    the world and to the healthcare providers who serve them. These
    medicines benefit patients through improved health, longevity and
    quality of life. Operations of Glaxo Wellcome circle the globe and
    address a common purpose--providing innovative medicines that prevent
    and treat disease. True to that mission, Glaxo Wellcome scientists and
    other employees are searching for new and better treatments for a
    variety of diseases. Glaxo Wellcome's research and development
    expenditures worldwide total nearly $2 billion annually.
        There is an intricate process of medical discovery and innovation
    that relies on the relationship of inter-dependent partners--
    government, academia, biomedical research industries, foundation,
    health professional and consumers. As a representative of industry, I
    welcome the opportunity to address the unique contributions of the
    government in this regard as it is the national commitment to the NIH
    which lays the foundation of our ability to bring research discoveries
    from the laboratory to the consumer.
        All of the partners in the process of medical discovery are
    interdependent, each contributes a piece to the puzzle. The success of
    our national enterprise is not possible without each piece being
    vibrant and strong. A healthy partnership between government, industry,
    academia and non-profit foundations is critical to maintain the U.S.
    position as the world leader in medical research and innovation. Most
    importantly, the millions of Americans afflicted with catastrophic,
    acute and chronic diseases are the REAL beneficiaries of this
    partnership.
        Medical research and innovation has enabled significant strides in
    the 20th Century.
      --Treatments for people with chronic diseases have stemmed from
            medical research and innovation: antihypertensives control
            blood pressure; diabetics can stay health by using insulin and
            the potential of gene therapy approaches to this disease offer
            great hope for the future; new biotech products help thin the
            dangerously-thick mucus of people with cystic fibrosis and we
            have thousands of individuals with CF living into their 30's
            and 40's who would have died if not for this type of research
            advance; asthmatics breathe normally, work and enjoy sports,
            and, in fact, have represented the U.S. in the Olympics in
            swimming and other sports.
      --People with life threatening and chronic diseases look to medical
            research and innovation for the promise and hope of a cure.
            Today, we have drugs to cure testicular cancer, childhood
            leukemia, and Hodgkin's disease, and to prevent strokes or
            permanent heart damage from heart attacks. Heart surgeries fix
            hardening of the arteries and aneurysms, and new medical
            technologies help premature babies survive without brain
            damage, vision loss and digestive disorders.
      --Medical research and innovation have prevailed to improve the
            quality of life for millions of us, but the challenge remains
            to find answers for millions more who face disease and
            disability. Every day Americans suffer or die from cancer,
            heart disease, strokes, stomach ulcers, Alzheimer's disease,
            Parkinson's disease, multiple sclerosis, cystic fibrosis and
            other devastating diseases.
        In short, medical research and innovation have won many battles,
    but the war is far from over, and for many, the battle has hardly
    begun.
        The health of our nation is dependent upon a strong national
    commitment to medical research. The research opportunities have never
    been greater, or more exciting, and the drive to diminish the federal
    commitment to discretionary spending priorities, including medical
    research, has never been more paramount. Further, our leadership in the
    international arena in medical research and innovation is at a critical
    juncture, due to our international competitors' expansion of their
    research investment over the past two decades. Today, Japan and Germany
    devote a greater percent of their GNP to research and development than
    the U.S. does. This is a warning sign which should be taken seriously
    as we contemplate national priorities.
        At the close of this decade, we are on the brink of great medical
    breakthroughs. We have attracted some of the best scientific minds to
    our national enterprise, and initiated ground-breaking programs that
    have already yielded critical knowledge, and improved patient care and
    quality of life. However, we are confronted with the extraordinary
    challenge of how to maintain the integrity of our research efforts, and
    rapidly and cost-effectively translate that research and development
    into use by health professionals and consumers, in both the public and
    private sectors. We are in a race against the clock when it comes to
    many forms of cancer, heart disease, Alzheimer's, Cystic Fibrosis, A-T,
    and many other catastrophic diseases.
        The NIH is the primary funding source for basic research through
    universities and independent research institutions throughout the
    country. The NIH also plays a critical role in support of clinical and
    translational research. NIH-supported research has led to major
    advances in the understanding and treatment of various diseases and
    disabilities. NIH-funded researchers are now at the forefront of the
    global effort to build upon these findings and develop new, more
    effective treatment regimens. Success against disease will only be
    possible with a strengthened national research effort. Therefore,
    continued support of the NIH is critical to the vitality of our medical
    research enterprise.
        Industry presently devotes 21.2 percent of its U.S. sales to
    research and development. This investment, which is greater than that
    of the NIH, is directed toward efforts quite different from the NIH but
    complimentary. Our basic research efforts are more targeted and our
    clinical research initiatives more directed toward the end product.
    Industry does not, and cannot, devote resources to the discovery of new
    knowledge at the basic, fundamental level the NIH supports. Industry's
    responsibility in this partnership is the maturation of scientific
    knowledge and the translation of research discoveries from the bench to
    the bedside through targeted basic and applied research efforts.
    Budget Request
        Our national capacity to translate research from the laboratory to
    the patient is challenged on many fronts. We must: continue to recruit
    bright young scientists into research careers; provide a sustainable,
    predictable funding base for the National Institutes of Health and the
    Food and Drug Administration, which guarantees the safety and
    effectiveness of medical products; and, ensure regulatory policies
    which support the rapid translation of research and public health
    protection.
        While the NIH has received strong Congressional support over the
    past several years--a 6.9 percent increase in funding for fiscal year
    1997, and a 5.7 percent increase for fiscal year 1996--the NIH needs a
    sustainable, stable base of funding augmented by new resources in order
    to pursue the extraordinary research opportunities available now. With
    its current level of support, the NIH is only able to fund 1 in 4 of
    all approved research grant applications. It is clear that innovative
    treatments will only be realized through a conscious, planned, and
    broadly supported investment in medical research and development.
        Congress holds the key to realize this vision by virtue of the
    mandates it places on and the resources it provides to the NIH. The
    FDA-NIH Council also recognizes that the Members of this great body
    have a very tough job in terms of weighing the available resources and
    numerous worthy federal programs. We recognize the tough choices that
    you have ahead of you. And, we recognize and are extremely grateful for
    the support that this Committee has provided to the NIH in the past.
        The FDA-NIH Council supports the vision articulated in H.R. 83,
    S.R. 15 and S. 124 which call for a doubling of the budget for the NIH
    in response to our declining commitment to research, based on the
    proportion of GNP invested in research, over the past 30 years. In that
    regard, we urge that the Committee take the first step in meeting this
    objective and provide a 15 percent increase to the NIH.
        Let me reiterate one point. The FDA/NIH Council understands the
    severe budget constraints which exist presently, but we also believe
    that the functions of the NIH are too vital to consider appropriating
    any less. Health must be one of our nation's top priorities, for a
    wealthy and economically sound country is predicated on the health and
    well being of its citizens.
        Thank you for the opportunity to present a statement before the
    Committee today. We appreciate your support of this agency and look
    forward to working with you in the coming months.
        The members of the FDA/NIH Council are: the A-T's Children Project;
    Candlelighters Childhood Cancer Foundation; Allergy and Asthma
    Network--Mothers of Asthmatics, Inc.; Alliance for Aging Research;
    Schering-Plough Corporation; American Medical Association; Merck & Co.,
    Inc.; Pfizer, Inc.; American Veterinary Medical Association; Joint
    Council of Allergy, Asthma and Immunology; Impotence World Association,
    Inc.; American Society of Tropical Medicine and Hygiene; National
    Multiple Sclerosis Society; Monsanto Company; Arthritis Foundation;
    Glaxo Wellcome, Inc.; American Social Health Association; Cystic
    Fibrosis Foundation; Bristol-Myers Squibb Company; American Association
    for Cancer Research; National Depressive and Manic-Depressive
    Association; Society of Toxicology; Research Society on Alcoholism; and
    the Autism Society of America.
                                     ______

        Prepared Statement of the Joint Council of Allergy, Asthma and
                                   Immunology
        The Joint Council of Allergy, Asthma and Immunology (JCAAI) is
    pleased to submit public witness testimony in support of fiscal year
    1998 appropriations for allergy, asthma and immunology programs
    supported by the National Institutes of Health (NIH). The JCAAI is a
    professional, nonprofit organization comprised of the American Academy
    of Allergy, Asthma and Immunology and the American College of Allergy,
    Asthma and Immunology, and it consists of more than 4,000 researchers
    and clinicians who are dedicated to providing care for the 50 million
    Americans who suffer from allergic or immune disorders.
        First, we would like to express our appreciation for the tremendous
    support this Committee has provided to the NIH during the past two
    years. We know that you have been faced with tremendous budget
    constraints and we sincerely appreciate your making the NIH a priority
    for funding increases. We urge your continued leadership for NIH and
    for the allergy, asthma, and immunology programs supported by the
    National Institute of Allergy and Infectious Diseases (NIAID) and the
    National Heart, Lung, and Blood Institute (NHLBI).
        We would like to identify three areas of research where we believe
    additional support is necessary.
    Sinusitis
        Incidence and Cost.--Chronic sinusitis, an inflammatory disease of
    the sinus, affects an estimated 35 million Americans (14 percent of the
    population), and its prevalence is rising. Between 1980 and 1992,
    individuals with sinusitis reported 73 million restricted activity
    days, compared to 50 million during 1986-1988. It was the most
    frequently reported disease in the 1993 National Health Interview
    Survey.
        The 1993 National Hospital Discharge Survey reported 16,000
    discharges for acute sinusitis and 29,000 discharges for chronic
    sinusitis. Approximately 11.6 million physician visits for chronic
    sinusitis were reported for 1991. Direct medical costs of sinusitis
    were nearly $2.4 billion in 1992. The number of antibiotic
    prescriptions for acute and chronic sinusitis was 13 million, compared
    to 5.8 million in 1985.
        Research.--Chronic sinusitis is an inflammatory process in which
    instigating agents have been difficult to identify or prove. Better
    methods are needed to dissect the pathologic process of chronic
    inflammation in order to understand the critical cellular elements,
    cytokines, and mediators that are involved. More research is also
    needed on possible bacterial, viral, and fungal organisms.
        No convincing evidence exists that supports a role of environmental
    pollutants in causing or prolonging sinusitis. However, occupations may
    have a role. Host susceptibility may influence the inflammatory
    reaction to toxicant exposure, including perhaps in conjunction with a
    genetic basis. Interaction with a pre-existing condition such as hay
    fever may also aggravate inflammatory reaction.
        Sinusitis frequently complicates asthma, yet more research is
    needed to evaluate this relationship. Some individuals with chronic
    cough are thought to have asthma, but it is possible that the cough may
    be due to sinusitis. Surgery has shown to benefit some sinusitis
    patients with asthma. Physicians frequently associate nasal
    inflammation with sinus inflammation, assuming that rhinitis precedes
    sinus disease and that its treatment can prevent or improve sinus
    disease. However, the evidence for causality between rhinitis and
    sinusitis is not always certain.
        Although the roles of viruses and bacteria in the etiology of acute
    infectious sinus disease are well established, the role of microbial
    infection in chronic sinus disease is less well-defined. More research
    is needed on how viruses cause sinus disease, what risk factors lead to
    secondary bacterial infection, and what new approaches to treatment
    will prove useful.
        The analysis of various treatments for chronic sinusitis is only in
    its early stages. For example, the use of corticosteroids is
    controversial. Potential benefits include the ability to reduce mucosal
    swelling, and corticosteroids have the proven ability to shrink nasal
    polyps, which occur frequently in chronic sinusitis. However, no
    studies exist that prove the unequivocal efficacy of topical
    corticosteroids in sinusitis. Studies are needed to compare antibiotic
    and topical corticosteroid treatment.
        Clearly, additional research is needed to determine who is at risk
    of developing sinusitis, why they get it, and how it should be treated.
    This must include a definition of the clinical and pathologic state of
    sinusitis; the role, if any, of infectious agents including viruses,
    bacteria, and fungi; and an investigation of host responsiveness to
    pathogens, environmental toxicants, irritants, and allergens.
    Allergic Diseases
        Incidence.--As many as 50 million Americans--one in five people in
    this country--suffer from allergic diseases. One out of every 11
    physician office visits is for an allergic disease. Allergic rhinitis
    (hay fever) alone affects as many as 35 million Americans and is the
    most common chronic disease. Food allergies and food intolerances are
    also a major problem. Eight percent of children under six years of age
    experience food intolerances. Allergy to natural rubber latex is
    becoming an increasingly important health problem, especially as
    medical personnel are wearing latex gloves more frequently to protect
    against HIV and hepatitis B. More than 1,000 allergic reactions to
    latex were reported to the Food and Drug Administration from 1988 to
    1992, including 15 deaths.
        Allergic reactions can be minor, such as reactions to pollen, mold,
    or dust, or they can be severe and potentially fatal, such as reactions
    to penicillin, insect venom, or allergic reactions to food. As many as
    2 million people experience severe reactions to insect stings every
    year, and many experts believe life-threatening allergic reactions to
    food may occur just as frequently.
        Research.--A variety of therapies have been developed to treat
    allergies, but researchers still do not fully understand certain
    critical aspects of allergies. When an allergic individual comes in
    contact with an allergen (the allergy-provoking substance), immune
    system cells produce an unusual type of antibody known as
    immunoglobulin E, or IgE, which starts the allergic reaction.
    Researchers are attempting how to comprehend how the immune system
    recognizes an allergen, why some people have a more severe reaction to
    an allergen, and what factors, including environmental and genetic,
    might be responsible for allergic diseases.
        NIAID-supported researchers are among the leaders in the study of
    allergies. For example, they identified the IgE antibody and they have
    identified the structure of the IgE receptor. By blocking the activity
    of the receptor, researchers may be able to provide a new therapy for
    allergies. NIAID-supported research has also demonstrated that DNA
    vaccines are capable of stimulating an immune response that may
    diminish allergy symptoms. Such vaccines could provide a more potent,
    consistent, and convenient treatment than the current therapy of
    allergy shots.
        Researchers have also identified the biologic events that are
    responsible for late phase reaction (LPR). LPR usually occurs about 4
    to 6 hours after the allergen has entered the body. The discovery that
    LPR involve inflammatory cells and that they resemble allergic
    reactions has led to the recognition that inflammation is a central
    feature of allergic diseases (as well as asthma). Researchers have also
    learned that inhaled corticosteroids inhibit LPR. The inflammatory
    process is very complex but these and other breakthroughs are providing
    insights.
    Asthma
        Incidence and Cost.--Asthma is a major health problem. As many as
    15 million people in the U.S. have asthma, and the number of people
    with self-reported asthma increased from 10.4 million in 1990 to 14.6
    million in 1994. The actual number of asthmatics may be higher--asthma
    is sometimes difficult to diagnose because it often resembles other
    respiratory problems such as emphysema. Children have a 41 percent
    higher prevalence of asthma than that of the general population and an
    estimated 4.8 million children under age 18 have asthma. It is one of
    the most common reasons for missed days of school (parents are also
    forced to miss work to care for their asthmatic child).
        Asthma is approximately 25 percent more prevalent in African-
    American children than in Caucasian children, and asthmatic African-
    American children experience more severe disability and have more
    frequent hospitalizations than their Caucasian counterparts. In 1993,
    African-Americans aged 5 to 14 were four times more likely to die from
    asthma than Caucasians, and those aged to 4 were six times more likely
    to die from asthma. Asthma is also more prevalent in African-American
    adults than in Caucasians. Their hospitalization rate in 1992 was 400
    percent higher than for Caucasians and their age-adjusted mortality
    rate was 300 percent higher. The reason for the higher incidence is
    uncertain; however, lack of access to proper medical care is related to
    the poor outcomes.
        Direct and indirect costs for asthma were an estimated $6.2 billion
    in 1990, 43 percent of which was associated with emergency room use,
    hospitalization, and death. Inpatient hospital costs represented the
    largest single direct expenditure, totalling $1.6 billion, and
    emergency room use cost another $295 million. In 1993, asthma was the
    first-listed diagnosis in 468,000 hospital admissions and asthmatic
    children under age 15 experienced 159,000 hospitalizations (asthma is
    the leading cause of hospitalization of children).
        Mortality.--The death rate for asthma is increasing. From 1983 to
    1993, asthma accounted for 3,850 deaths among persons up to age 24. For
    children 5 to 14 years of age, the asthma death rate nearly doubled,
    and it did double during this period for persons aged 15 to 24.
        Research.--Asthma varies from person to person--symptoms range from
    mild to severe. While there is not a cure for asthma, it can be
    controlled with proper measures, including medications, learning to
    manage episodes, and learning to identify and avoid what triggers an
    episode. Triggers include controlling irritants in the air--90 percent
    of children with asthma and half of adult asthmatics have allergies;
    avoiding excess physical exertion; and managing emotions. Medications
    consist of anti-allergy drugs, corticosteroids, and bronchodilators.
        In 1989, the NHLBI initiated a 5-year demonstration program a five
    universities to develop, implement, and evaluate interventions to
    reduce morbidity from asthma among African-American and Hispanic
    children. The goals were to develop programs to reduce asthma
    morbidity, decrease inappropriate use of health care resources, and
    enhance the quality of life of these children. The demonstration
    program resulted in improved educational and management programs,
    strategies for recruiting patients and staff, and techniques and
    resources for community and professional education. NHLBI's National
    Asthma Education and Prevention Program has disseminated this
    information to researchers, clinicians, and community health officials.
    NHLBI emphasized: the importance of antiinflammatory medication; the
    use of home peak flow meters to monitor asthma; and, educational and
    behavioral techniques to improve adherence to treatment programs.
        In August 1996, researchers (Weinstein, et al) published a report
    that summarized the results of a study to examine the economic impact
    of a short-term inpatient hospitalization program for children with
    severe asthma. The program, based in part on programs developed by
    NHLBI, significantly reduced inpatient and emergency care days for the
    subsequent 4 years of follow-up. In a study of 59 children, the median
    of 7 inpatient days the year prior to rehabilitation was reduced to
    zero (0) days during each of the following 4 years. Emergency care
    visits were reduced from 4 in the year prior to rehabilitation to zero.
    The year before rehabilitation, medication charges as a percentage of
    medical charges was 9 percent; by the third and fourth years of follow-
    up they were 45 percent of total medical charges.
        The NIAID National Cooperative Inner-City Asthma Study has designed
    new strategies to reduce asthma morbidity and mortality. The first
    phase of the study looked at over 1,500 children and discovered factors
    including high levels of indoor allergen, especially cockroach allergen
    (the leading asthma-producing material that children were exposed to),
    high levels of smoking among family members; and exposure to high
    levels of nitrogen dioxide. In the second phase, 1,000 high risk
    children and their families were assisted by a nurse practitioner in
    managing the child's condition and instituting environmental controls.
    This resulted in significant reduction in asthma symptoms, improved
    school attendance, and a 30 percent decrease in asthma-related
    hospitalizations and unscheduled physician and emergency room visits.
    The NIAID has continued the study to disseminate the results.
        Drug Development.--Pharmaceutical researchers are providing new
    hope for asthmatics. The Food and Drug Administration recently approved
    two asthma drugs in an entirely new chemical class of drugs, the first
    since the 1970s, and more than 40 companies worldwide are at work on
    new asthma drugs. Existing drugs usually work--if taken properly. Many
    asthma drugs are delivered through the use of an inhaler, which
    patients often misuse by inhaling too fast or by exhaling when the
    medicine is released. Furthermore, as highlighted by NHLBI recently,
    some drugs including corticosteroids may have side effects. Thus, while
    there is a lot of work remaining, the potential for new therapies is
    significant.
    Summary
        Allergies and asthma are serious health problems, affecting
    millions of Americans in both acute and chronic forms. Through research
    supported by the NHLBI and NIAID, researchers and clinicians have
    learned much about how to diagnose and treat these diseases, but much
    more remains to be done. The JCAAI requests a 9 percent increase for
    the NIH in fiscal year 1998 to explore some of the exciting research
    opportunities that exist in these areas.
        Thank you for your consideration of our request.
                                     ______

            Prepared Statement of the Research Society on Alcoholism
        The Research Society on Alcoholism (RSA) is pleased to submit
    public witness testimony in support of the National Institutes of
    Health and the National Institute on Alcohol Abuse and Alcoholism. The
    RSA is a professional research society whose 1,100 members conduct
    basic and clinical research on alcoholism and alcohol abuse.
        Alcoholism is a tragedy that touches all Americans. One in ten
    Americans will suffer from alcoholism or alcohol abuse, but their
    drinking will impact on the family, the community, and society as a
    whole. Alcohol is a factor in 50 percent of all homicides, 40 percent
    of motor vehicle fatalities, 30 percent of all suicides, and 30 percent
    of all accidental deaths. Every American is affected and all Americans
    bear the cost. Children exposed to alcohol during pregnancy are
    afflicted with birth defects and mental retardation. Nearly 7 million
    children live with an alcoholic parent, often in chaotic homes where
    they suffer physical and emotional abuse. Ominously, a recent study
    reported that 30 percent of high school seniors drink heavily or
    consume more than 5 drinks at a time at least once every 2 weeks.
        Alcoholism and alcohol abuse cost the nation nearly $100 billion
    annually. One tenth of this pays for treatment; the rest is the cost of
    lost productivity, accidents, violence, and premature death.
    Prohibition did not solve the problem of alcoholism, and current
    therapy is simply not good enough. Only research holds the promise of
    effective prevention and treatment of alcoholism; however, alcohol
    research is woefully underfunded. The National Institute on Alcohol
    Abuse and Alcoholism (NIAAA) funds over 90 percent of all alcohol
    research conducted in the United States. For 1997, the budget of the
    National Institute on Alcohol Abuse and Alcoholism (NIAAA) is $211
    million. We are committing to alcohol research only 2 dollars for every
    1,000 dollars lost from alcohol abuse and alcoholism and only 12
    dollars for every affected individual. In 1996, NIAAA could fund just
    21 percent of all grant applications; in 1997 they will fund fewer. The
    comparable figure for NIH is 28 percent.
        The inability to fund outstanding grant applications comes at a
    time of unprecedented opportunities in alcohol research. In the next
    few months you will learn of important new findings on the genetics of
    alcoholism. For the first time scientists, funded by the NIAAA
    Collaborative Study on the Genetics of Alcoholism (COGA), have
    identified discrete regions of the human genome that contribute to the
    heritability of alcoholism. This first success in the genetic mapping
    of a complex biological and behavioral disorder must be followed by an
    expensive, labor intensive effort to pinpoint and identify the genes of
    interest. Armed with this knowledge, health providers may one day be
    able to identify individuals at risk and target these individuals for
    prevention programs. Genetic research will accelerate the rational
    design of drugs to treat alcoholism and may improve our understanding
    of the interaction between heredity and environment in the development
    of alcoholism.
        One of the most promising areas of alcohol research is in the field
    of neuroscience. The development of effective drug therapies for
    alcoholism requires an improved understanding of how alcohol changes
    brain function to produce craving, loss of control, tolerance, and the
    alcohol withdrawal syndrome. Naltrexone, a drug that blocks the brain's
    natural opiates, reduces craving for alcohol and helps maintain
    abstinence. Ongoing clinical trials will help determine which patients
    benefit most from naltrexone and how the drug can best be used. Another
    promising drug, nalmefene, has potential advantages over naltrexone,
    including a longer half-life, less liver toxicity, and more complete
    blockade of opioid receptors. Scientists have recently discovered a new
    class of drugs known as neurosteroids. Planned studies on neurosteroids
    may lead to improved treatment of alcohol withdrawal and more effective
    control of alcohol craving.
        One of the most tragic consequences of alcoholism is Fetal Alcohol
    Syndrome (FAS). FAS is a permanent condition characterized by mental
    retardation, small size, behavioral problems, and specific facial
    abnormalities. Fetal alcohol syndrome is the most common, preventable
    cause of mental retardation in the United States. If pregnant women did
    not drink, there would be no fetal alcohol syndrome; however, as we
    know too well, many individuals cannot stop drinking, even when the
    consequences are well known.
        From animal studies we have learned that alcohol's effects during
    pregnancy depend on the timing, pattern, and amount of alcohol intake.
    Magnetic resonance imaging, brain wave recordings, and behavioral
    assessments of affected children have identified specific changes in
    brain structure and function that result from heavy prenatal alcohol
    exposure. A better understanding of alcohol's effects on the developing
    brain will allow us to better target the treatment of exposed people.
    This research will allow those with FAS to maximize their potential and
    circumvent some of their deficits. An improved understanding of risk
    factors will help us target and prevent FAS.
        Recent research has shown that even light drinking during pregnancy
    can interrupt normal development. Consequently, most researchers
    recommend that pregnant women abstain totally from drinking. In the
    laboratory, it has been shown that low doses of alcohol can interfere
    with normal processes of development. We are optimistic that
    understanding the mechanism by which alcohol disrupts fetal development
    will lead to effective strategies for reducing deficiencies associated
    with FAS.
        Alcohol abuse and alcoholism are devastating problems of national
    importance. Alcohol research has now reached a critical juncture, and
    the scientific opportunities are numerous. With the continued support
    of this Committee and the Congress, we are optimistic that the next few
    years will bring significant advances in alcohol research.
        The Research Society on Alcoholism requests that funding for NIAAA
    in fiscal year 1998 be increased by $31.7 million (15 percent) to
    $243.6 million. This request balances the impact of the disease, the
    abundant research opportunities, the low success rate of NIAAA grant
    applications, and well-known fiscal constraints. We deeply appreciate
    your past leadership on behalf of NIH and urge your continued efforts
    for 1998.
        Thank you for your consideration of our request.
                                     ______

              Prepared Statement of the Autism Society of America
        The Autism Society of America (ASA) appreciates the opportunity to
    present written testimony in support of fiscal year 1998 funding for
    the National Institutes of Health (NIH).
        We would like to thank the Committee for its previous support of an
    autism focused research effort at NIH. Currently, the NIH is engaged in
    some exciting research relating to the neurobiology and genetics of
    autism, however, much remains to be learned about this greatly
    misunderstood disease and how to assist not only those unborn, but also
    the more than 400,000 individuals who live with this disorder every
    day.
        The Autism Society of America was founded in 1965 by parents of
    children with autism. It was established to help parents, family
    members, professionals and caregivers to learn about autism and how to
    effectively deal with this disability. ASA provides information to our
    members through a toll-free information line, an extensive library, a
    bi-monthly newsletter ``The ADVOCATE'', and an annual national
    conference. In addition, ASA has recently established a research
    foundation, the Autism Society of America Foundation, which is funded
    by grassroots support. Parents of children with autism are struggling
    every day to find treatments to help their children deal with this
    disease and they are willing to put their own money into much-needed
    research efforts.
        What do we know about autism? We know it is not a mental illness.
    Children with autism are not unruly kids with a behavior problem.
    Autism is not caused by bad parents who gave their children too little
    attention. In fact, no known factors in the psychological environment
    of a child have been shown to cause autism.
        Autism is a developmental disability that typically appears during
    the first three years of life. It is believed to be a genetically-based
    neurological disorder that affects more than 400,000 individuals in the
    United States, making it the third most prevalent developmental
    disability. Autism is more common than Down Syndrome. Autism is four
    times more prevalent in boys than girls, and knows no racial, ethnic
    nor social boundaries. Family income, lifestyle, and educational levels
    do not affect the chance of autism's occurrence. At the present time,
    there is no prevention, treatment, or cure for autism. The estimated
    health care cost associated with autism is greater than $13 billion a
    year.
        There is no ``typical'' manifestation of autism. It is a spectrum
    disorder, meaning the symptoms and characteristics of autism can
    present themselves in a wide variety of combinations, from mild to
    severe. Although autism is defined by a certain set of behaviors,
    children and adults can exhibit any combination of the behaviors in any
    degree of severity. Two children, both with a diagnosis of autism, can
    act very differently from one another.
    National Institutes of Health
        When questioned recently, Dr. Varmus stated that this is a
    promising time in research on autism. The Autism Society of America
    agrees with this assessment. After many years of neglect and lack of
    sufficient funding, researchers at several institutes are now working
    to unlock the mysteries of this disease--a ``new era'' of autism
    research is underway.
        This process began in earnest in the Spring of 1995 when NIH
    convened a state-of-the-science conference focused solely on autism at
    the urging of this Committee. The Autism Society of America initiated
    this conference. The President of ASA, Sandra H. Kownacki, participated
    in the NIH Autism Working Group which issued a report to the NIH after
    the Conference reviewing the current research on autism, identifying
    gaps in knowledge, and making recommendations for future research
    activities. This report is being used today to guide autism research
    activities at the NIH.
        Follow-up conferences on autism were held during 1996. These
    conferences included more than 1,000 researchers and clinicians, as
    well as over 1,000 parents of individuals with autism. Results of the
    first conference were shared with those present, and a multi-
    disciplinary, multi-institute research effort was initiated by the NIH.
        The National Institute on Child Health and Human Development
    (NICHD) has taken the lead in coordinating this effort. NICHD joined
    with the National Institute on Deafness and Other Communication
    Disorders (NIDCD) in issuing a Request for Applications (RFA) on the
    neurobiology and genetics of autism. The response to the RFA was so
    outstanding that the NIH Office of the Director gave NICHD additional
    funds to ensure that the most promising proposals could be funded.
        In addition, NIH has established an internal NIH Autism
    Coordinating Committee co-chaired by the Directors of NICHD and the
    National Institute of Mental Health (NIMH). Because autism is such a
    complex disease, many different institutes are engaged in research that
    might be beneficial in advancing our understanding of the disease,
    developing treatments, and continuing our hope of finding a cure. This
    coordinating committee will ensure that the research is most
    effectively conducted throughout all of the institutes currently
    engaged in autism research.
        As a result of all of these efforts, autism research is expanding
    in many areas including genetics, molecular biology, neuropathology,
    the development of animal models, and behavioral and cognitive
    neuroscience. Several examples of these research opportunities include
    the following:
      --NIMH supported researchers have conducted research which indicates
            more clearly that genetic factors are related to the cause of
            autism, and most likely trigger disruption in brain development
            during early fetal life. It is possible that these researchers
            will be able to identify autism's genetic triggers within the
            next several years. This genetic research will be facilitated
            by work being done by the National Institute on Human Genome
            Research.
      --An animal model is being utilized to examine brain development
            during gestation and researchers hope to learn more about the
            onset of autism.
      --Research on treatments is being expanded to examine more closely
            the benefits of behavioral interventions, especially at an
            early age.
      --Research on cognition in autism also appears to have relevance to
            treatment and is being expanded to better understand sensory
            processing in individuals with autism. This has implications as
            one looks at attention, perception, memory, communication,
            socialization, reasoning, and motor output.
        The Autism Society of America is encouraged by the research efforts
    currently being undertaken by the NIH. We believe that progress is only
    possible through a coordinated approach. We hope NIH, with the support
    and encouragement of the Congress, will continue this autism-focused
    effort. We must make up for the years of neglect in NIH's autism
    research efforts.
        The impact of autism is significant in both health and economic
    terms. As parents of children with autism, members of the Austism
    Society of America are keenly aware of these impacts. Basic and
    clinical research in this area is progressing and the scientific
    opportunities that exist are very encouraging. With additional support,
    we are optimistic that significant improvements can be made in the
    prevention and treatment of autism. Therefore, to exploit these
    research opportunities, the Autism Society of America strongly supports
    a doubling of NIH appropriations over five years as proposed by Senator
    Mack and Specter in S.Res. 15. This would require a 15 percent increase
    for fiscal year 1998. As an absolute floor, we support the
    recommendation of the Ad Hoc Group for Medical Research Funding for a 9
    percent increase in fiscal year 1998.
    Special Education
        The Austism Society of America also supports full funding of the
    Individuals with Disabilities Education Act (IDEA). We understand that
    you might be contemplating a significant increase in funding for Part
    B, which we support, but we would also like to mention the importance
    of providing sufficient funding for Part H, the early intervention
    programs.
        Due to the unique nature of autism, education is the only chance
    children with autism have to reach their highest potential. Early
    intervention is critical to ensure that students with autism enter
    school ready to learn. Part H of IDEA provides the opportunity for
    children from birth to three to gain these skills.
    Conclusion
        On behalf of the more than 24,000 members of the Autism Society of
    America, thank you again for this opportunity to present testimony. We
    look forward to working with the Committee as you develop funding
    priorities for the coming year.
                                     ______

         Prepared Statement of the Alliance for Eye and Vision Research
        The Alliance for Eye and Vision Research (AEVR) thanks you for the
    opportunity to present written testimony to the Committee. The Alliance
    is a coalition of the stakeholders in eye and vision research--
    industry, researchers, health care providers, and lay advocates. AEVR's
    ultimate goal is to achieve optimal eye care for all Americans through
    research and public education.
        AEVR appreciates the leadership role that the Committee has taken
    in stabilizing the funding base for the National Institutes of Health
    (NIH) over the past several years. As you have met the challenges posed
    by the deficit, and the pressing spending priorities that have been so
    articulately placed before Congress, the eye and vision research
    community is grateful for the strong support pledged to the NIH. Thank
    you.
        Our eyes are the gateway to the world. Yet, eye and vision
    disorders touch all of our lives in some way. More than 120 million
    Americans wear corrective glasses or contact lenses. More than 12
    million Americans suffer from some form of irreversible visual
    impairment such as retinitis pigmentosa. More than 1 million Americans
    are legally blind, and that number promises to grow as the proportion
    of our population continues to age. Four common, aging-related eye
    diseases--Age-related Macular Degeneration, Glaucoma, Diabetic
    Retinopathy and Cataracts--will account for the sharp increase in eye
    and vision disorders. If left unchecked, these sight-robbing diseases
    will undermine the quality of life of millions more and place an
    enormous economic burden on families, their communities and the health
    care delivery system that we can ill afford.
        Our nation spends approximately $38.4 billion every year in direct
    and indirect costs associated with eye diseases and disorders. As our
    population ages, these costs will increase, and challenge our health
    care delivery system in dramatic ways. It is only through further
    advances in research that we are going to gain a better understanding
    of vision disorders so that we can find cost-effective treatments and
    cures, and hopefully, give back something that few Americans can
    imagine doing without--their sight.
        According to experts in the field of eye and vision disorders
    related to aging who participated in the White House Conference on
    Aging Mini-Conference hosted by the Alliance, the scientific and
    technological capability now exists to make substantial progress in a
    number of age-related disorders, If an expanded research effort is
    supported. This research progress will only be possible if we can
    insure that the National Eye Institute (NEI) has the resources
    necessary to pursue initiatives in key areas.
        We would like to raise several issues regarding the funding of the
    NEI, the primary Federal agency devoted to research, training, and
    education focused on eye and vision disorders.
        First, funding for the NEI has not kept pace with the funding
    growth seen by the NIH as a whole--11 percent versus 40 percent. We
    have attached a graph to the testimony which demonstrates this pattern.
    We understand the rationale as to why the Committee has not been
    altering the proportional allocation recommended in the
    Administration's proposal for the categorical Institutes, and that you
    believe that the scientific priorities have been established by the
    agency in that budget submission. However, we are concerned that the
    NEI has been unintentionally disadvantaged in the budget development
    process and that the Administration's proposal over the past several
    years has not recognized the very serious ramifications of underfunding
    this key scientific area. Specifically, the repetitive practice of
    allocating a smaller percentage increase to the NEI than most of the
    other NIH Institutes has served to disadvantage research programs in
    areas of growing incidence, especially age-related eye and vision
    disorders.
        Second, NEI has a great track record for scientific discovery.
    Major research breakthroughs have resulted from NEI-supported research.
    For instance, the retinoblastoma gene, isolated, cloned and sequenced
    by NEI-supported investigators, serves as the prototype of a class of
    human cancer genes and will have a tremendous impact on future cancer
    research progress. The molecular basis for converting light to an
    electrical signal in the photoreceptor rod has been identified. This
    information will have important implications as to how sensory
    information is transmitted in the brain--a finding which will impact
    not only vision research but neuroscience research as well. NEI is
    supporting researchers around the country who are working to find the
    mechanisms, including genetic triggers, that cause some of the most
    serious eye diseases of the retina and the cornea, as well as glaucoma.
    Given the long-term financial ramifications of research in age-related
    disorders, this type of initiative should be accelerated.
        NEI is one of the most cost effective and efficiently managed
    institutes at NIH. For example, the average cost of an NEI grant is
    $223,000, while the NIH average is $267,000. An NEI grant costs about
    20 percent less. Workload studies of NIH program staff have
    demonstrated that the workload of the NEI program staff is about twice
    the NIH average. In addition, the cost of management overhead for NEI
    grants is less than half of that of some NIH Institutes.
        We believe that the NEI is a tremendous success story within the
    NIH. We believe that NEI could be more successful in pushing the
    frontiers of science to find effective cures and treatments for age-
    related eye and vision disorders if the Committee develops a plan to
    redress the long-standing problem of NEI growth vs. NIH growth. We urge
    you to do so.
    Age-Related Macular Degeneration
        We would like to highlight a particular eye disease that has
    enormously grave implications for millions of Americans over the age
    65, but remains a largely unknown threat. It has received considerable
    notoriety in the press as of late, with considerable discussion on
    shows like 20/20 and National Public Radio. This disease is age-related
    macular degeneration or AMD.
        AMD is a disease of the retina which affects central vision. It is
    the leading cause of blindness in people over the age of 65 and affects
    nearly 5 percent of this population--1.7 million people. It is expected
    to affect 6.3 million individuals by the year 2030.
        One of our members organizations, Prevent Blindness America, which
    is a large eye health and safety advocacy organization, knows first-
    hand about the devastating impact of AMD. Each day they receive phone
    calls from people all over the United States who are losing their
    vision as a result of this disease. They are terrified of losing their
    independence and their ability to interact socially with others.
        Imagine waking up one morning and not being able to read the
    newspaper. Imagine not being able to recognize your loved ones because
    their faces are a blur. Imagine putting on a brown socks with your blue
    suit because you can't distinguish colors. All of these things are
    painful for those in the grip of AMD.
        Recently, National Public Radio did a segment on living with AMD.
    The elderly woman interviewed described her everyday life from trying
    to read her mail, to making a tuna fish sandwich with cat food, to
    putting her fingers in the dip at a cocktail party because she thought
    it was a bowl of nuts.
        Writer Henry Grunwald recently wrote an article in The New Yorker
    entitled ``Losing Sight'' in which he describes his own personal
    struggle with AMD. He writes about seeing life in a ``haze'' and
    relates several experiences where he has greeted strangers on the
    street as old friends and walked right by good friends because their
    faces are a blur. He explains his frustration about no longer being
    able to use his word processor to write because he cannot read the
    words on the screen. He now dictates and has an assistant who types the
    text and reads it back to him line by line--an arduous process, and one
    unavailable to those without his resources.
        Initially, AMD affects the ability of an individual to see details,
    such as facial features, road signs, and fine print. In the early
    stages, vision may become blurred and gradually worsen resulting in a
    loss of central vision. 90 percent of individuals with AMD suffer from
    the ``dry'' form which manifests itself through a slow, progressive
    shrinking of the macula in the retina, eventually leading to loss of
    central vision. The other form of AMD is referred to as ``wet'' AMD and
    it occurs in 10 percent of AMD cases. However, wet AMD is accounts for
    90 percent of all blindness from the disease. Wet AMD is caused when
    new blood vessels grow under the retina and leak or bleed, thereby
    damaging the macula and causing loss of central vision.
        At the present time, there is no cure for AMD and treatment remains
    limited. While laser treatment has been found to have some effect in
    delaying ``wet'' AMD, no current treatments exist that will reverse the
    slow loss of central vision that results from this disease. The only
    hope of slowing down the progression of this disease is by increasing
    our investment in medical research.
        NEI is already engaged in research efforts focused on AMD. NEI is
    currently spending $75 million for research on macular degeneration, of
    which $16 million is directly targeted to AMD. According to experts in
    the eye and vision research field, there are many areas of AMD research
    which are ripe for exploration. These include:
      --Expanding research on the macula of the retina and the retinal
            blood supply to identify genetic, nutritional, or other age-
            related changes which contribute to the development of AMD;
      --Exploring retinal immunology and retinal rescue by transplantation
            of neural retina and retinal pigment epithelium to determine if
            transplantation can be used therapeutically in AMD;
      --Studying growth factors and genetic approaches for rescuing or
            regenerating diseased retinal tissue;
      --Expanding the search for genes contributing to the development of
            AMD and the linkage between these gene defects and the death of
            photoreceptor cells in the macula;
      --Developing animal models of AMD to investigate the mechanism of
            photoreceptor cell death in this disease and subsequently
            developing a means of prevention and treatment;
      --Exploring the use of biological factors and inhibitors to prevent
            the development of abnormal blood vessels in AMD;
      --Expanding basic and applied research on low vision and developing
            better devices and other strategies to enable enhanced vision
            by those individuals with AMD by means of optical or electronic
            aids; and
      --Developing noninvasive techniques for the early diagnosis of AMD
            and better methods to prevent and treat the disease.
        The members of the Alliance for Eye and Vision Research are
    supportive of an increased research focus on eye and vision disorders,
    such as AMD, and hope the Committee will allocate additional funding to
    NEI to allow these critically important research efforts to continue
    and expand.
        While we recognize the budget constraints facing the Committee this
    year, AEVR believes a significant medical research effort funded by the
    NIH is critical to the longterm security of our nation. Therefore, we
    support a doubling of the NIH budget over the next five years as
    proposed in S. Res. 15. This would require a 15 percent increase in
    funding in fiscal year 1998. At a minimum, AEVR requests that you
    support funding for the NEI in fiscal year 1998 at $362.7 million as
    requested by the National Eye Institute Advisory Council in their
    ``Citizens Budget Proposal''.
        Our investment in eye and vision research continues to bring
    dividends, but much remains to be learned about eye and vision
    disorders. When asked, Americans fear the loss of eyesight more than
    the loss of any other sense. We must ensure that we are doing our best
    to find cures and treatments for eye and vision disorders, and
    providing quality eye care services and devices for those already
    visually impaired.
    [GRAPHIC] [TIFF OMITTED] T07JU11.006

                                     ______

      Prepared Statement of the National Depressive and Manic-Depressive
                                  Association
        The National Depressive and Manic Depressive Association
    appreciates the opportunity to present written testimony in support of
    fiscal year 1998 funding for the National Institutes of Health (NIH)
    and in particular the National Institute of Mental Health (NIMH).
        The National Depressive and Manic-Depressive Association is
    dedicated to increasing the awareness of depressive illnesses, and
    encouraging those individuals who are affected by these diseases to
    seek help. In any given year, 17.4 million American adults have some
    form of depressive illness such as major depression, bipolar disorder,
    or chronic, moderate depression. Women are twice as likely as men to
    experience major depression. Two out of three people with mood
    disorders do not get proper treatment because their symptoms are not
    recognized, are misdiagnosed, or due to the stigma associated with
    mental illness are blamed on personal weakness. While the cause of
    depression is not fully understood, it is clear that genetic,
    biochemical and environmental factors can play a role.
        As a patient-based organization, we are committed to educating
    patients, families, professionals, and the public about the nature of
    depression and manic depression as treatable medical diseases. We have
    a Scientific Advisory Board of over 60 distinguished researchers and
    practicing mental health professionals; a toll-free information line; a
    quarterly newsletter; annual conferences; and a grassroots network of
    more than 300 chapters throughout the United States.
        We strive to promote self-help for patients and families. Our
    support groups provide information and support for patients throughout
    the United States. These groups also give patients the opportunity to
    be with others who share these illnesses, and to share their knowledge
    and experiences with each other.
        Another of our goals is to eliminate discrimination and the stigma
    that is too often associated with mental illness. The fact is, many
    people who have depression are just like other Americans. We have
    successful careers, we take care of our families, and we live
    productive and fulfilling lives.
        Most importantly, National DMDA is an advocate for research.
    Research is the only hope people with depressive illnesses have to look
    forward toward a bright and productive future. Research advances are
    providing scientists with promising opportunities to better study the
    brain function and systems, but there is still a tremendous amount of
    research to be done. Depressive illnesses will affect millions of
    Americans during their lifetime and is more widespread than AIDS,
    cancer and coronary heart disease. The lack of awareness about the
    nature and treatments of depression along with the social stigma
    associated with mental illness has hindered society's ability to
    address the issue of depression. However, continued research promises
    to help us learn more about mental illnesses and to develop and improve
    treatment options. Hopefully, leading us one day to a cure.
        The National Institute of Mental Health leads the nation's research
    efforts to identify the causes of and the most effective treatments for
    mental illnesses. These conditions annually account for more than $148
    billion in direct health care costs, and indirect costs, such as lost
    work days for patients and care givers. The costs and treatment of
    these illnesses account for almost 10 percent of total U.S. annual
    health care expenditures. Investments in biomedical and behavioral
    research on mental disorders are imperative for preventing and treating
    these debilitating problems and controlling the costs associated with
    them.
        As a patient-based organization, we are pleased about the emphasis
    NIMH is placing on translational research. These efforts will ensure
    that clinical researchers are able to test and develop the promising
    discoveries of basic researchers, giving patients hope of new and
    better treatment options.
        There have been many exciting advances recently as a result of NIMH
    supported research on depression and manic-depression. For example,
    researchers have identified several chromosomes that may include genes
    that are linked to manic-depressive illness; clinical researchers have
    conducted an effective drug trial which appears to significantly
    improve treatment outcomes for children with depression; and
    researchers have helped to increase education about depression by
    developing a collaborative model of care which has been particularly
    helpful to primary care professionals.
        These research advances, in this the Decade of the Brain, have
    allowed many of us with depression to regain our lives. For that
    reason, National DMDA supports an increase in funding for NIMH as
    requested by the President in his budget. We are hopeful, however, that
    the Committee will provide a larger increase in funding for the NIH
    overall than requested by the President and that NIMH will receive an
    increase in funding proportional to the overall NIH increase.
        Therefore, on behalf of the millions of Americans who suffer from
    depression and depend on this research, the National Depressive and
    Manic-Depressive Association strongly supports a doubling of NIH
    appropriations over five years, as proposed by Senator Mack and Specter
    in S. Res. 15. This would require a 15 percent increase for fiscal year
    1998. As an absolute floor, we support the recommendation of the Ad Hoc
    Group for Medical Research Funding for a 9 percent increase in fiscal
    year 1998.
        Thank you again for the opportunity to present testimony. The
    National Depressive and Manic-Depressive Association looks forward to
    working with you to increase our national commitment to medical
    research, especially as it relates to mental illness.
                                     ______

     Prepared Statement of the American Association of Critical-Care Nurses
        Thank you, Chairman Specter, for inviting the American Association
    of Critical Care Nurses (AACN) to submit testimony for the hearing
    record in support of funding for the National Institute of Nursing
    Research (NINR), the Nursing Education Act, and the Agency for Health
    Care Policy and Research (AHCPR) for fiscal year 1998.
        AACN is a not-for-profit service association dedicated to the
    welfare of people experiencing critical illness or injury. Our energies
    are primarily directed toward advancing the art and science of critical
    care nursing and promoting environments that facilitate comprehensive
    professional nursing practice for those experiencing actual or
    potential illness or injury. Our vision is one of a health care system
    driven by the needs of patients where critical care nurses make their
    optimal contribution.
        AACN was founded in 1969 and has grown to become the world's
    largest specialty nursing organization with nearly 80,000 members
    representing the United States and 35 countries around the world. AACN
    has chapters in every state in the U.S. and overseas, numbering over
    270.
    The National Institute of Nursing Research
        The National Institute of Nursing Research (NINR) at the National
    Institute of Health (NIH) improves the quality of life for all
    Americans by promoting healthy lifestyles and behaviors that will ease
    the effects of disease. AACN strongly supports the NINR's goals of
    health care effectiveness, cost effectiveness, and assuring that the
    scientific agenda has a human aspect and is directly relevant to
    applying research findings to improve the nation's health. Nursing
    research findings, once thought to affect nursing practice alone, are
    now understood to be relevant to the work of all health care
    practitioners, and NINR supports research on the biological and
    behavioral aspects of critical health problems confronting the nation.
        As nurses providing care to the critically ill, one of the most
    important things we can do for our patients is provide relief from
    their pain and suffering. AACN is pleased that NINR is playing a major
    role in NIH's pain research initiative. Nursing affords a unique
    vantage point from which to examine the way pain affects patients and
    their caregivers. NINR-sponsored scientists are conducting research
    investigating whether women and men respond in the same way to drugs
    used for pain relief. This research is important because it offers the
    potential for providing women with increased pain relief for surgical
    pain, as well as pain associated with nerve damage, cancer, and other
    disease conditions. Pain is also a costly health problem, costing our
    nation over $100 billion annually in lost productivity and health care
    expenses.
        AACN currently sponsors Thunder Project II, a large-sample, multi-
    site research project in partnership with seven other nursing
    organizations. The purpose of the research is to examine pain
    perceptions and responses of acutely or critically ill pediatric and
    adult patients to selected producers. Specifically, the research will:
    describe patients' pain perceptions and responses for each selected
    procedure across different phases of the procedure; compare patients'
    pain perceptions and responses across procedures; examine relationships
    between patients' pain perceptions and responses to selected procedures
    and factors such as the patient's age, gender and ethnicity; and,
    describe distress associated with selected procedures. AACN is pleased
    that NINR has identified research in the area of end-of-life care as a
    priority initiative for fiscal year 1998. NINR is planning to sponsor
    research addressing four objectives: managing the transition to
    palliative care; understanding and managing pain and other symptoms,
    such as nausea and depression in the context of end-stage illness;
    measuring outcomes (relief of symptoms); and, documenting costs
    incurred by patients and family caregivers during end-stage illness.
        AACN is disappointed in the President's budget request of a 2.6
    percent increase in funding for NIH in fiscal year 1998. AACN strongly
    supports a doubling of NIH appropriations over the next five years,
    which would require a fifteen percent increase for fiscal year 1998. As
    an absolute floor, AACN supports the recommendation of the Ad Hoc Group
    for Medical Research Funding for a nine percent increase for fiscal
    year 1998.
    Nursing Education
        AACN believes that education is fundamental to professional growth
    and to excellence in clinical practice and optimal patient outcomes.
    Practitioners must commit to life-long learning to assure they remain
    competent in fulfilling their obligations to the patients and families
    they serve.
        AACN is extremely disturbed by the cuts to health professional
    education programs included in the President's fiscal year 1998 budget
    request. The budget request consolidates existing multiple categorical
    grant programs under Title VII and Title VIII of the Public Health
    Service Act and replaces them with five program clusters. The Nursing
    Education/Practice cluster includes the following programs: Nursing
    Special Projects, Advanced Nurse Education, Nurse Practitioner/Nurse
    Midwife Education, Professional Nurse Traineeships, Nurse Anesthetist
    Training, and Nursing Education. Overall, funding for health
    professions training is cut from $290 million to $130 million. And
    funding for these specific nursing programs is cut from the current
    level of $63 million to $7.7 million for fiscal year 1998. These
    programs are essential in providing support to strengthen the capacity
    for basic nurse education and practice, train nurse practitioners and
    other advanced practice nurses, and increase nursing workforce
    diversity.
        These drastic cuts would force a number of programs to close
    completely, and would affect approximately 4,000 students who rely on
    traineeships to help finance their education.
        In addition to affecting these students, AACN is concerned about
    these cuts because we believe that it is not sound public policy.
    According to the Bureau of Labor Statistics, demand for health
    professionals is expected to grow by 47 percent by the year 2005, with
    the need for advanced practice registered nurses among the greatest. In
    addition, and Institute of Medicine study on the role of nursing staff
    in hospitals and nursing homes found that a more advanced, or more
    broadly trained registered nurse (RN) workforce will be needed in the
    future. Such training is currently being provided under the programs
    funded under Title VIII of the PHS.
        AACN supports funding for the Title VII and Title VIII health
    professions programs at the fiscal year 1997 plus inflation, which
    amounts to $302 million.
    The Agency for Health Care Policy and Research
        AACN firmly believes that research is needed to develop a
    scientific basis for critical care nursing practice and to achieve a
    broad understanding of the role and impact of critical care nurses on
    patient outcomes. The science-based research supported by the Agency
    for Health Care Policy and Research (AHCPR) is an important compliment
    to the biomedical research conducted at NIH. AHCPR's clinical research
    goes the next step by evaluating the effectiveness of new and existing
    medical interventions in clinical practice.
        Our health care delivery system continues to undergo dramatic
    changes, making outcomes research and objective measures more important
    than ever before. AHCPR is the principal federal agency responsible for
    determining what is effective and cost-effective in health care.
    ACHPR's goals are to determine what works best in clinical practice,
    improve the cost-effective use of health care resources, help consumers
    make more informed choices, and measure and improve the quality of
    care.
        Many research projects funded by AHCPR are gradually helping our
    communities refocus health care so that it is truly driven by the needs
    of patients and their families.
        As you know, in 1990 Congress passed the Patient Self Determination
    Act, with the goal of educating Americans about their right to make
    their own health care choices. This is of particular interest to
    critical care nurses in light of a Robert Wood Johnson study that
    followed 9,000 critically ill patients and found discrepancies between
    patient's end-of-life care directions and their actual treatment.
        This act requires hospitals and nursing homes to inform patients
    admitted to their facility about their options in completing an
    advanced directive or living will. The act is designed to help health
    care providers, patients and their families. But since there was no
    provision for implementation funding, patients and their families have
    not been helped. Advanced directives such as living wills and medical
    power of attorney are the only vehicle to let health care providers
    know patients' wishes in case they should become incapacitated and
    unable to make treatment decisions. In addition, advanced directives
    can do away with much of the wasteful emotional cost of guilt and
    suffering as a result of being forced to make difficult decisions about
    treatment for someone else without knowing their wishes as well as
    wasteful treatment costs. AACN is currently working to educate
    consumers about the Patient Self Determination Act and its importance.
    The Committee's support for AHCPR has provided AACN with the resources
    to design a community outreach program to improve completion rates for
    advance directives. AACN's program, Research on Advance Care Planning
    Including Advanced Directives, has a specific emphasis on an education
    program stressing definition and documentation of care preferences so
    that in the event of catastrophic illness or injury and thus inability
    to participate in health care decision making, individual care
    preferences can be honored.
        The Research on Advance Care Planning Including Advanced Directives
    is an excellent project, and AACN encourages the Committee to include
    additional funds in its fiscal year 1998 bill to complete the project.
                                     ______

      Prepared Statement of the American Society of Tropical Medicine and
                                    Hygiene
        The American Society of Tropical Medicine and Hygiene (ASTMH) is
    pleased to submit public witness testimony to urge your continued
    support of the infectious diseases activities, including emerging
    infectious diseases and tropical infectious diseases, of the National
    Institutes of Health (NIH) and the Centers for Disease Control and
    Prevention (CDC). ASTMH is a professional society of 3,100 researchers
    and practitioners dedicated to the prevention and treatment of
    infectious and tropical infectious diseases.
    Background
        Remarkable advances made in science, medicine, and public health
    throughout this century have resulted in tremendous improvements in the
    fight against infectious diseases. However, these successes have also
    given us a false hope and a perception that infectious diseases are a
    thing of the past. Nothing could be further from the truth. The
    microorganisms (parasites, bacteria, and viruses) are getting resistant
    to our drugs and the globalization of our food supply and international
    travel bring increasingly worrisome infectious diseases to our
    doorstep, such as hantavirus, drug-resistant streptococcal infections,
    and chlorine-resistant cryptosporidial parasites. Between 1980 and
    1992, the death rate due to infectious diseases increased 58 percent in
    the United States, making it the third leading cause of death in the
    country.
        Worldwide the threat is even greater. Approximately 2.5 billion
    people are at risk of tropical infectious diseases and 500 million
    people presently suffer from them. I would like to take a few moments
    to discuss just two of these, diarrheal diseases and malaria, which are
    among the most common causes of morbidity and death in children under
    the age of 5.
    Diarrheal Diseases
        Diarrheal diseases kill 3-4 million children each year (over 9,000
    children each day). In some areas of Brazil, 1 child in every 4 may
    never reach his or her 5th birthday, over half of whom die of diarrheal
    diseases. Many children experience 8 to 10 dehydrating, malnourishing
    diarrheal illnesses each year in their more critical developmental
    first 2 years of life. Yet these children are teaching us new
    approaches to diagnosis and a new glutamine-based oral rehydration and
    nutrition therapy that have direct application to U.S. patients in
    hospitals, day care centers, and nursing homes. Further, work on
    another enteric infection, H. pylori, is curing ulcers and preventing
    stomach cancer in the United States.
    Malaria
        An estimated 200 to 300 million cases of malaria occur annually and
    at least 1.5 million of these are fatal. Mosquito resistance to
    pesticides, and parasite resistance to drugs have resulted in a
    dramatic resurgence of malaria. While mosquito-borne malaria was
    interrupted in the U.S. during the 1940s, localized outbreaks
    sporadically occur. For example, CDC reported a case in Georgia in June
    1996 in a man who had never been to an area in which malaria is common.
        The ASTMH is very encouraged by NIH Director Varmus' efforts to
    bring renewed attention to malaria, including his role in a recent
    gathering of international scientific leaders in Dakar, Senegal. In
    1998, the National Institute of Allergy and Infectious Diseases (NIAID)
    will launch a new malaria clinical research initiative to expand our
    understanding of human immunity to Plasmodium falciparum, the etiologic
    agent of the most severe form of malaria. Earlier this year,
    researchers at the Walter Reed Army Institute of Research in
    Washington, D.C. reported that an experimental vaccine devised by the
    U.S. Army and a private pharmaceutical company worked well in a
    preliminary test. A synthetic compound based on a protein in Plasmodium
    falciparum protected six of seven people after they had been bitten by
    infected mosquitoes.
    National Institutes of Health
        NIH efforts in infectious diseases are primarily conducted by the
    NIAID. Basic research supported by NIAID is the essential underpinning
    of our disease surveillance, prevention, and control efforts, and NIAID
    works in full partnership with the CDC to respond to the public health
    threat of emerging infectious diseases. NIAID programs directed toward
    tropical and emerging infectious diseases include the following:
      --The Expanded Research on Emerging Diseases, which was initiated in
            1997. This will provide support to basic and applied research
            on emerging and reemerging diseases of parasitic, viral,
            bacterial, and fungal etiology. A second initiative will be
            launched in 1998.
      --The Modern Vaccines for Targeted Emerging and Reemerging Diseases
            was also begun in 1997. This will expand research on mycoses
            and measles, both of which have a need for improved vaccines.
            NIAID is the lead federal agency for vaccine research and
            development. Next year, it plans to start a new initiative
            entitled Basic Mechanisms of Vaccine Efficacy, which will
            provide support for innovative strategies in vaccine
            development.
      --Special Emphasis Program Projects such as the International
            Collaboration on Infectious Diseases Research program; the
            Tropical Medicine Research Centers; and the Tropical Disease
            Research Units.
        NIH also supports research and research training through the
    Fogarty International Center (FIC). FIC's purpose is to support the
    missions of the NIH institutes and to meet the broader global health
    needs of the U.S. through international programs. International
    partnerships are critical to identify areas of disease, conduct
    laboratory and field investigations, and test interventions.
        FIC provides awards to enable foreign scientists to train in the
    U.S. and to enable American scientists to conduct research abroad. This
    can have a tremendous impact on diseases that are common in the U.S. In
    1997, FIC will fully initiate a new program, the International Training
    and Research in Emerging Infectious Diseases program in collaboration
    with NIAID, to train scientists from developing nations in infectious
    diseases research, control, and prevention strategies.
    Centers for Disease Control and Prevention
        The ASTMH is very appreciative of the generous increase that this
    Committee provided to the CDC Infectious Diseases program in 1997. We
    are also appreciative that you recommended that CDC use a portion of
    the additional resources to address the infrastructure component of the
    CDC's 1994 plan, ``Addressing Emerging Infectious Disease Threats: A
    Prevention Strategy for the United States.'' The deterioration of
    federal, state, and local health laboratories is a serious problem.
        As part of this critical need, the CDC has planned for a new
    laboratory building to provide facilities for investigations on
    infectious pathogens requiring medium- to high-level containment.
    Without additional resources, highly infectious pathogen facility needs
    cannot be met. A new facility is needed to replace the outdated and
    overcrowded laboratories presently in use, including many in which
    security and safety are of concern.
        For 1998, the ASTMH urges that Congress support the
    Administration's request for a $25 million increase in CDC Infectious
    Diseases activities, including a $15 million increase to continue the
    implementation of the Emerging Infections plan. These funds will be
    used in part to continue the expansion and improvement of our national
    public health laboratory facilities. While the ASTMH is very
    appreciative of the significant funding increases provided by Congress
    for CDC Infectious Diseases activities over the past five years, it is
    essential that adequate resources be made available to provide CDC and
    state and local authorities with the capacity to fully address emerging
    and reemerging infectious diseases, as outlined in the 1994 CDC plan.
    Summary
        We know that infectious agents will continue to be discovered and
    that some previously recognized pathogens will continue to reemerge as
    serious public health problems. However, many uncertainties exist. For
    example, we do not know where or when they will appear, what they will
    look like, or how they will behave. To be prepared, we must have an
    adequate surveillance system and modern infrastructure facilities,
    coupled with scientific expertise in both basic and applied areas, to
    develop whatever tools are necessary to rapidly respond to and control
    the threats posed by these diseases.
        The ASTMH urges your continued support of these activities. We
    request a nine percent increase for the NIH. Furthermore, we request
    that Congress support the Administration's proposed $25 million
    increase for Infectious Diseases activities at the CDC.
        Thank you for your consideration of our request.
                                     ______

        Prepared Statement of J. Alfred Rider, M.D., Ph.D., President,
                      Children's Brain Diseases Foundation
        I am Doctor J. Alfred Rider, President of the Board of Trustees of
    the Children's Brain Diseases Foundation. It is a pleasure to submit
    testimony on behalf of the Foundation for inclusion in the Senate
    Appropriations Committee, Labor-HHS Education Subcommittee hearing
    record for fiscal year 1997/1998. I am submitting my testimony on
    behalf of the Children's Brain Diseases Foundation and the thousands of
    children and their families who are affected with Batten disease.
        Specifically, I would like to address the need for continued
    funding at least at the previous 1994 level plus a modest increase for
    Batten disease. Batten disease is a neurological disorder affecting the
    brains of infants, children and young adults. It occurs once in every
    12,500 births. There are approximately 440,000 carriers of this
    disorder in the United States. It is the most common neuro-genetic
    storage disease in children. Although there are four major types of
    Batten disease, the usual case is characterized by motor and
    intellectual deterioration, visual loss, behavioral changes, the onset
    of progressively severe seizures and terminates in death in a
    vegetative state. This irreversibly severe illness constitutes an
    enormous nursing and financial burden to families with afflicted
    children. Patients may live in a deteriorating state, from 10 to 43
    years. The changes that occur in the brain in these children are quite
    similar to many of the changes that occur in the aging person. Thus,
    effective treatment for Batten disease may also allow us to alter the
    aging process and age associated senility in our aging citizens.
        Batten disease is now recognized world wide, but continued research
    money is needed to successfully advance the research to determine the
    exact cause of this disease.
        The Children's Brain Diseases Foundation, begun in 1968, has had a
    direct role in stimulating interest in Batten disease world wide by
    granting money to various investigators. The Foundation has sponsored
    six world wide symposiums; the most recent in Helsinki, Finland, June
    1996. There are now over 100 investigators world wide. Their work must
    continue to be encouraged and supported.
        A major impetus to these advances occurred as the direct result of
    your committee's perseverance and interest which began to achieve
    fruition in 1991 when for the first time, the committee recognized that
    not enough attention was being spent on Batten disease, and they
    directed the National Institute of Neurological Disease and Stroke
    (NINDS) to expand its research in this direction.
        I am happy to say that the NINDS heeded your requests and
    suggestions and actively solicited research grants for Batten disease
    by sending out an official Request for Applications (RFA). A special
    committee was established to review Batten disease grants since it was
    felt that the usual committees did not have sufficient expertise to
    make proper evaluations. Numerous applications were received and a
    significant increase in money was spent on Batten disease research. In
    1994, $3,272,699 was spent.
        In 1995, a group in Finland, in collaboration with the University
    of Texas, isolated the gene defect; mutations in the palmitoyl protein
    thioesterase gene localized on chromosome 1 p32, causing the infantile
    form of Batten disease, and the International Batten disease Consortium
    isolated the genetic defect in the juvenile form of Batten disease and
    have found it to be on chromosome 16p12.1. Just recently, a group in
    England, headed by Doctor Mark Gardiner, identified the region that
    contains the gene for the classical late infantile form of Batten
    disease. It lies on chromosome 11p15, and the gene for the variant form
    of the late infantile lies on chromosome 15q21-23.
        It is now possible to make an absolute definitive diagnosis by a
    simple blood test, and it is also possible to identify carriers in the
    three forms. The whole field is now opened up for treatment by gene and
    enzyme replacement, and the possible prevention of three forms of the
    disease by genetic counseling, including in vitro fertilization.
        In spite of these three unprecedented major significant
    breakthroughs, the NINDS in fiscal year 1996 has only spent $2,459,885
    on research grants. This is approximately 22 percent less than the
    $3,272,699 in fiscal year 1994. We are at a loss to understand this and
    are afraid that this decrease may cast a damper on the whole research
    process. Our scientists are there. They are like expensive finely tuned
    complicated scientific machines and like all machines, they need fuel.
    Instead of traditional fuels, these individuals need American dollars
    in sufficient amounts so that they may pay for their expensive new
    scientific equipment as well as being able to hire the technical help
    necessary to expedite the research.
        Much needs to be done. The exact genetic defect in the late
    infantile and adult forms of Batten disease must be isolated. The
    enzyme defects resulting from gene abnormalities in all four types must
    be determined. This should then lead to definitive therapy by gene
    replacement or specific enzyme therapy. Several laboratories are
    already set up to make definitive diagnosis in the infantile, late
    infantile and juvenile forms of Batten disease.
        We are cognizant of the difficulty in getting funds for research.
    However, the amount requested is a small price to pay to solve a
    disease which wrecks havoc on the victims and families and is draining
    our national resources by approximately 712 million dollars per year
    based on approximately 300 children born with Batten disease each year
    and others living with this disease at an average treatment and
    maintenance cost of over $150,000 per year for each year of life. This
    lifetime, in a vegetative state, can last 10 to 43 years.
        Although there have been three significant breakthroughs with
    regard to gene localization in Batten disease, we were disappointed
    that the funding for fiscal year 1996 was approximately 22 percent less
    than in fiscal year 1994. Consequently, we would like to suggest the
    following wording.
    Suggested Wording
        ``The Committee continues to be concerned with the pace of research
    in Batten disease. The Committee believes that the Institute should
    actively solicit and encourage quality grant applications for Batten
    disease and that it continue to take the steps necessary to assure that
    a vigorous research program is sustained and expanded. The Committee
    requests that the funding for Batten disease research for fiscal year
    1997 be at least equal to the funding provided for fiscal year 1994''.
                                     ______

     Prepared Statement of the National Alopecia Areata Foundation and the
            Coalition of Patient Advocates for Skin Disease Research
        Chairman Specter and members of the Senate Subcommittee on
    Appropriations for the Departments of Labor, Health and Human Services,
    and Education, I am Jan Shapiro, a person with alopecia areata for the
    past fifteen years, and a support group leader in Northern Virginia. I
    am testifying on behalf of the National Alopecia Areata Foundation
    (NAAF). The National Alopecia Areata Foundation \1\ is the largest
    organization in the nation dedicated to finding a cure for alopecia
    areata. It also provides support for those with alopecia through a
    publication program and support groups. The support groups provide
    information and direction to thousands of people with alopecia areata.
    As a support group leader I am sometimes the first person, outside of
    the medical community, that a person turns to for help and information.
    Frequently people call who are scared, misinformed and afraid. The
    support group provides a forum to reach out to others, problem-solve
    and grow.
    ---------------------------------------------------------------------------
        \1\ The National Alopecia Areata Foundation receives no federal
    grants or sub-grants, nor do we receive federal contracts or sub-
    contracts. Through the generosity of federal employees throughout the
    United States and around the world we receive contributions of
    approximately $5,000 through the Combined Federal Campaign.
    ---------------------------------------------------------------------------
        The National Alopecia Areata Foundation is also a member of, and
    currently the headquarters for, the Coalition of Patient Advocates for
    Skin Disease Research. The Coalition, which operates as a voluntary
    organization and as such receives no public or private money, provides
    an umbrella to over 22 ``lay'' skin groups. These groups represent
    millions of people who suffer from a wide range of skin diseases. We
    work together for two reasons. First, to provide information to others
    about why research is needed. And secondly, so that we may push for a
    wide ranging research agenda. Many of us believe that diseases such as
    alopecia, lupus and others are the result of a malfunctioning immune
    system. When the key is found to one of our diseases then it is likely
    that many of the other diseases represented in the coalition will be
    cured. By working together we will make a difference.
        Alopecia areata is a disease that strikes over four million
    Americans. It is the loss of hair. For some it is a quarter size patch
    that can be easily covered, for others it is the loss of every hair
    follicle on their body. For over half of the people with alopecia
    areata it starts between the ages of 5 and 9. It strikes members of all
    ethnic groups. The loss of hair has several types of impacts. Hair
    provides significant protection for the body. The loss of eyelashes
    means that even the simple act of opening and closing ones eyes to keep
    the dust out is a difficult process.
        However, alopecia is not simply a physical problem, it has
    surprisingly serious psychological demands. For many people, when they
    first discover their hair falling out they are devastated. They think
    that they are the only ones in the world with the disease. Frequently
    when they go to their doctors they discover that even their physicians
    have little idea of what is happening, why it is happening, or even if
    others suffer from it. For some treatment options stop there, while for
    others they begin the long process of finding someone who knows
    something about the condition.
        Unfortunately in our society the lack of information is not the
    only problem. Frequently people with alopecia believe that they are
    vulnerable to the stares and grimaces of those around them. People have
    lost their jobs. A noted news anchor lost his on-air job because he was
    suddenly perceived as being unappealing. This lack of being appealing
    (either real or perceived) causes many people to lose confidence in
    themselves and they begin to withdraw from society.
        Recently, two parents called me about their children. These two
    girls, one 12, the other 14, are loosing their hair right now. They are
    staying inside their homes, fearing that going outside will lead to
    harassment, non-acceptance, and not being accepted as normal. It seems
    to be hardest on children.
        Fortunately, there are people who can help, and in many of our
    support groups people learn how they can help themselves both
    cosmetically and psychologically. They learn that they are not alone
    and that they can do something about their sense of vulnerability and
    isolation. But the real solution will be when we find a cure for
    alopecia areata.
        Over the past ten years the Foundation has raised and provided
    almost $1\1/2\ million for research studies. Our privately funded
    research studies have been studying the genetic structure of hair, the
    function of the immune system, and supporting non-human research
    studies looking for the cause of alopecia.
        Part of our research program is to continue to work with the
    National Institute of Arthritis, Musculoskeletal and Skin Disorders to
    create a research agenda. In 1990 and 1994 NIAMS and NAAF conducted two
    international research symposiums on what is known about alopecia
    areata. One of the many results from this joint program was that NIAMS
    funded a significant study on the structure of the disease. Another
    result was the discovery of animals with alopecia--thus NAAF was able
    to support the first non-human host of the disease.
        We are now planning for the Third International Symposium on
    Alopecia Areata, with NIAMS. This symposium, as with the earlier
    meetings will bring researchers, clinicians, and patients together from
    around the world to study what progress has been made and how new
    studies should be structured. The convening authority of NIAMS is
    critical for this sharing of knowledge.
        Working together in this unique private-public partnership is a
    significant step toward finding a cure. We hope to continue this
    relationship with NIAMS providing limited funds for critical studies,
    while we continue to work to support the research effort as well. With
    this partnership we have been able to sharpen the research agenda so
    that we are looking at questions that are building on a wider and more
    informed base of knowledge.
        The Coalition of Patient Advocates for Skin Disease Research ask
    that you continue to support NIAMS. We are asking for an increase of 9
    percent. This increase would allow the Institute to increase its
    ability to fund more research projects and support more programs that
    will help the over 60 million people who are impacted by skin diseases.
    We also believe that work done in any of the disease areas represented
    by the Coalition of Patient Advocates for Skin Disease Research, will
    have a profound impact on the lives of over 60 million Americans who
    suffer from one or more than one of the diseases that NIAMS is charged
    with investigating. We also believe that when a cure is found for any
    of these diseases that there is a good chance that it will help in
    finding a cure for many of the other skin diseases.
        Thank you for your time and concern.
                                     ______

       Prepared Statement of Felice J. Levine, Ph.D., Executive Officer,
                       American Sociological Association
        Thank you for the opportunity to submit a written statement
    regarding fiscal year 1998 appropriations for the National Institutes
    of Health. I am Felice J. Levine, Executive Officer of the American
    Sociological Association, a scientific society of more than 13,000
    sociologists who are in research, teaching, and practice. Every day,
    sociological research makes important contributions to understanding
    the causes and consequences of our nation's most pressing health
    issues--including violence, AIDS, children's health, and aging.
        In appropriating funds for the National Institutes of Health, this
    Subcommittee's record is so impressive because you have sent strong
    signals that funds should be used to coordinate among federal health
    institutes, support essential health research, and train the next
    generation of scientists. That focus on coordination, research, and
    training has resulted in crucial advances that otherwise would not have
    been possible. I commend and applaud your commitment and ask that you
    extend it in fiscal year 1998 and in the years ahead. Our nation will
    benefit tremendously if you do.
        I also commend your support for balance in the types of research
    conducted by the National Institutes of Health. Your Subcommittee has
    recognized that social and behavioral factors--such as lifestyle
    choices, the desire and ability to maintain exercise and medical
    regimens, social and psychological functioning, socioeconomic
    conditions, and the larger social and cultural environment--all affect
    health. Today, because you recognized the compelling need to expand the
    types of research we conduct, we have a better balance of biomedical
    and behavioral and social science research. That balance is essential
    if the National Institutes of Health is to succeed in its mission. You
    have done a great service to this nation.
                           obssr: making a difference
        Perhaps one of Congress' most important recent accomplishments
    regarding the National Institutes of Health has been to conceive and
    support the Office of Behavioral and Social Sciences Research (OBSSR).
    Since 1995, OBSSR has coordinated social and behavioral science
    research across the National Institutes of Health, and integrated it
    with biomedical research. The work of OBSSR is based on the premise
    that behavioral, social, and cultural factors affect health--and that
    they do not act in isolation. We know that molecular, physiological,
    behavioral, and social factors interact in complex ways that affect
    health. With an innovative strategic plan for the future and continued
    support from Congress, OBSSR is poised to continue to create synergy
    and vastly improve the outcomes of health research for years to come.
        In just two years, OBSSR's efforts to promote coordination among
    agencies has resulted in progress on a number of critical issues. One
    of those issues is violence. No topic deserves more attention. Violence
    has had devastating effects on all the core social institutions in our
    society. Even with recent declines in some types of violence in some
    large cities, violence has invaded our homes and streets, affecting
    virtually every aspect of society. Social and behavioral science
    research is our best hope to understand and address the violence that
    pervades our society.
        In fiscal year 1996, OBSSR addressed the violence issue by co-
    sponsoring a request for applications entitled Research on Violence
    Against Women Within the Family. OBSSR took the lead in this initiative
    in collaboration with the Department of Justice's National Institute of
    Justice and also coordinated Department of Health and Human Services
    activity among eight other agencies--the NIH Office of Research on
    Women's Health, NIH Office of Research on Minority Health, National
    Institute on Drug Abuse, National Institute on Alcohol Abuse and
    Alcoholism, National Institute of Mental Health, National Institute on
    Aging, National Center on Child Abuse and Neglect, and Centers for
    Disease Control and Prevention. This remarkable collaboration was the
    first inter-departmental initiative to address violence from a
    multitude of perspectives, bringing together health, mental health,
    public health. criminal justice, and other social science experts. As a
    result, ten promising new research projects are now underway, including
    studies of interventions for rape victims, battered women and their
    children, and domestic violence among Latinos. This is precisely the
    kind of approach that has been lacking, as the American Sociological
    Association underscored in its book, Social Causes of Violence:
    Creating a Science Agenda, distributed to every Member of Congress last
    year.
        I could cite similar examples of OBSSR's leadership in advancing
    the cutting edge of science through conferences, science writers'
    workshops, and training initiatives. They, too, would make the same
    point that OBSSR is playing a catalytic role in addressing some of our
    most pressing health problems. Given OBSSR's remarkable track record,
    impressive capacity, and proven ability to use a small amount of
    resources to leverage tremendous gains, we urge the Congress to expand
    resources for this office. A budget of $4 million for OBSSR in fiscal
    year 1998 would have a multiplier effect for every additional dollar
    beyond its fiscal year 1997 allocation.
                  investing in research: a compelling priority
        Mr. Chair and members of the Subcommittee, I now want to turn to
    the importance of investing in basic health research and doing so fully
    inclusive of the social and behavioral sciences. With approximately
    half the deaths in this country attributable in part to social and
    behavioral factors such as lifestyle and diet, health research must
    include these considerations. Quite simply, investing in fundamental
    science in these areas ultimately creates a healthier nation.
    AIDS
        One topic where we can see the powerful, positive impact of
    conducting social and behavioral science research relates to AIDS.
    Epidemics of the size and scope of AIDS require examination of the
    social contexts in which they occur. By examining social relationships,
    families, communities, institutions and cultures, social science
    research has and can continue to uncover features of the HIV/AIDS
    environment which contribute to the transmission and potential
    prevention of this disease.
        This kind of cutting edge research is occurring in sociology today
    because funding is available to support it throughout our federal
    health institutes. For example, sociological research demonstrates
    that, when drug users educate other drug users about how AIDS is
    spread, they share equipment less, use shooting galleries less often,
    decrease their injections, and are more likely to use new needles or
    sterilize used needles. Obviously, this research has important
    implications for stopping the transmission of AIDS. Yet, despite such
    emerging knowledge, we still have considerable work to do to understand
    fully how best to address the AIDS epidemic.
    Children's Health
        We have an urgent priority, too, to fund children's health
    initiatives and to include a focus on behavioral and social science
    research. I need not remind this Subcommittee of the ground-breaking
    work supported by the National Institute of Child Health and Human
    Development (NICHD). In a society with ever-changing social and family
    structures and mounting pressures on individuals and families, NICHD is
    funding multi-faceted research to improve the health and development of
    children.
        This research is so important that a coalition representing
    scientists, health professionals, and a wide range of advocates have
    created Friends of NICHD. The American Sociological Association is
    proud to be part of that effort. NICHD is supporting critical research
    on a range of children's health issues that includes crucial social and
    behavioral factors. This work is worthy of strong support. It addresses
    crucial health issues in our society--how to teach parenting and
    nurturing skills, prevent injuries and fatalities in young children,
    address learning disabilities, and teach parents steps that can prevent
    sudden infant death. It addresses strategies to reduce unintended teen
    pregnancy, stop teens from using drugs or alcohol, understand and
    improve fathers' role in child care and child rearing, and develop
    behavioral interventions that address risks minority youth face. It
    supports and promotes research such as the sociological studies that
    have produced essential data on the economic impact of divorce and the
    consequences of growing up in homes without both parents.
        Our work in learning to protect and improve children's health is
    not nearly done. Our nation's rates of youth drug abuse, school drop-
    outs, and juvenile violence is compelling evidence of the need to
    continue funding research into children's health. Our children's health
    is our nation's future. Therefore, we should not under-fund this
    essential research.
    Aging
        The third research area I want to highlight is aging. The
    demographics of our society demand that we move quickly to better
    understand aging. The National Institute on Aging supports essential
    research on the social and behavioral aspects of aging, as well as the
    physical implications of getting older.
        Federally funded research today is examining a range of emerging
    issues, including health service delivery in an aging society, ways to
    promote preventative self-care among older people, influences on
    individuals' ability to cope with illness and disability, and the
    nature and effectiveness of evolving types of home-and community-based
    services for older Americans. In one example, social scientists working
    with the National Institute on Aging have documented a slowing in
    disability rates among older people over the past decade and are
    exploring the reasons and implications. But, with so much more to
    learn, it is imperative that we increase federal resources for research
    on aging.
        In focusing on the need for social science knowledge, I have
    discussed initiatives and research on AIDS, children's health,
    violence, and aging. These are but a few examples of the critically
    important research being conducted today with federal support. More
    work will be needed in these and other fields tomorrow--and for years
    to come. But our nation will not be able to do that work unless we
    continue to produce scientists who are prepared and capable of meeting
    emerging challenges.
                      training: a commitment to the future
        Adequate funding is essential to developing the training programs
    that create future generations of scientists. Only a stable commitment
    to health research and investments in training will encourage future
    generations to enter these scientific fields. Anything less would deny
    our children and their children access to the health-related knowledge
    they need.
        One example of how this training can pay off is the Minority
    Fellowship Program, a collaborative effort between the American
    Sociological Association and the National Institute of Mental Health.
    The 23-year-old Minority Fellowship Program has trained more than 360
    minority scholars in the sociology of mental health. Through this long-
    term investment, we have produced scientists of color who are currently
    engaged in research on mental health and mental illness, including
    stress and coping strategies; identity, self-esteem, and emotional/
    psychological well-being; mental health and aging; violence and
    traumatic stress; substance abuse; homelessness; HIV/AIDS; utilization
    of health services among the mentally ill; and poverty, emotional, and
    physical well-being, among others. Plain and simple, this is knowledge
    we need.
        A more recent and similarly important training initiative is the B/
    START grant program. B/START stands for Behavioral Science Track Awards
    for Rapid Transition. The National Institute of Mental Health launched
    this program in 1994 to increase the number of behavioral researchers
    in the field. The National Institute on Drug Abuse launched its B/START
    program in 1996. The program provides seed money to junior researchers
    to let them pursue their work and overcome financial difficulties. The
    B/START program is an effective way to promote and nurture recently
    trained social and behavioral scientists, and it provides evidence that
    government recognizes the value of the work done in these fields. We
    recommend expanding this program across institutes and sending an
    explicit signal that B/START includes attention to social aspects of
    health and disease.
        Investing in training pays off, and failing to do so creates
    problems that take years to overcome. In 1994, the National Academy of
    Sciences emphasized the importance of increasing the number of social
    and behavioral scientists in health-related fields. In the report,
    Meeting the Nation's Needs for Biomedical and Behavioral Scientists,
    the Academy recommended allocating more National Research Service
    Awards to expand the workforce in behavioral science.
    Conclusion
        Adequate funding is essential to the effort to improve our nation's
    health. It enables coordination and integration across disciplines and
    fields. It supports research into health and well-being. It promotes
    training programs that develop the next generations of scientists.
        For these and other reasons, I urge this Subcommittee to build upon
    its impressive past commitment by ensuring that future research,
    training, and coordination at the National Institutes of Health is
    funded at levels adequate to meet current and emerging challenges. For
    fiscal year 1998, we support a funding increase of nine percent over
    the fiscal year 1997 budget to a total of $13.9 billion. Even in this
    era of financial constraint, this investment is vital to the health of
    our nation. The American people deserve no less. Thank you.
                                     ______

         Prepared Statement of the American Association of Blood Banks
        The American Association of Blood Banks (AABB) offers this
    statement in support of increased funding for the National Institutes
    of Health (NIH) and the National Heart, Lung, and Blood Institute
    (NHLBI). The AABB appreciates the generous support that transfusion
    medicine researchers have received from the NIH via the Congressional
    appropriations process. This statement briefly discusses the current
    state of transfusion medicine research and signals areas that our
    Association believes merit continued research support.
                    the american association of blood banks
        The AABB is the professional society for almost 8,500 individuals
    involved in blood banking and transfusion medicine. It represents more
    than 2,200 institutional members including community and Red Cross
    blood collection centers, hospital-based blood banks, and transfusion
    services as they collect, process, distribute and transfuse blood,
    blood products and hematopoietic stem cell products. Our members are
    responsible for virtually all of the blood collected and more than 80
    percent of the blood transfused in this country. Throughout its 50-year
    history, the AABB's highest priority has been to maintain and enhance
    the safety of the nation's blood supply.
        Many AABB physicians and scientists conduct research designed to
    assure that the American people have access to the safest transfusion
    services possible. The NHLBI and other Federal agencies fund much of
    this research.
        Through the National Blood Foundation (NBF), the AABB is developing
    a cadre of transfusion medicine researchers by supporting early career
    research in issues affecting transfusion medicine. NBF grant recipients
    have the opportunity to demonstrate superior research ability in NBF
    grant-sponsored research which often enables them to secure larger
    grants for additional research.
                  scope and importance of transfusion medicine
        Transfusion medicine is a multidisciplinary medical specialty
    encompassing both clinical practice and basic research
    responsibilities. Each year in the United States, over 20 million blood
    components are transfused into approximately four million patients,
    providing fundamental support for many different surgical and medical
    treatments. Blood is needed for the care of patients with cancer; for
    accident and burn victims; for newborn babies needing intensive care;
    for transplant patients; for millions of patients who undergo surgery;
    and for individuals with heart, lung, liver or bowel diseases. A ready
    supply of safe blood is vital to the military.
        Future advances in the health care of the nation will depend on
    continued progress in the provision of safe and effective transfusion
    services.
        As a direct result of transfusion medicine research--much of it
    funded by the federal government through the NIH--the U.S. blood supply
    is now safer than ever.\1\ The NIH is currently sponsoring several
    important transfusion medicine research projects that can be expected
    to lead to further improvements in the safety and efficacy of blood
    transfusion. However, there are important research opportunities in
    this field that require additional investigation to assure that
    patients have access to the safest possible blood supply.
    ---------------------------------------------------------------------------
        \1\ According to the December 28, 1995 issue of The New England
    Journal of Medicine, the Centers for Disease Control and Prevention
    revised its estimate of the chances of acquiring HIV infection through
    a blood transfusion from one case for every 450,000 donations to one in
    every 660,000 blood donations.
    ---------------------------------------------------------------------------
                recommendations for improving transfusion safety
        Despite the great progress that has been made in the selection of
    donors who are at low risk for disease transmission and the use of and
    improvements to an extensive battery of tests to eliminate infected
    donors, the prevention of HIV and other transfusion-transmitted
    diseases remains a top priority of transfusion medicine researchers and
    all recipients of blood. The AABB urges the NIH and private sector
    researchers to continue research into the development of enhanced
    infectious disease tests and donor screening methods to further improve
    blood safety.
    Infectious Disease Testing:
        Current blood screening tests detect the presence of the antibodies
    produced in response to the targeted virus, rather than the virus
    itself. Each improvement to the test has lead to a decrease in the
    ``window period'' (the period of time between infection with HIV and
    the ability to detect the virus via screening tests).
        To improve infectious disease tests even more, the NHLBI is funding
    research into the use of gene amplification technology for the
    detection of the genetic material of viruses that cause AIDS and
    Hepatitis C. If successful, this research could lead to blood screening
    tests that further reduce the window period. However, before this
    technology can be implemented for screening blood collected for
    transfusion, more research is needed to address substantial technical
    and operational challenges.
    Pathogen Inactivation:
        The risk of acquiring identified pathogens through transfusion is
    lower than ever, yet world-wide travel and changing demographics could
    spread new viruses and bacteria into the U.S. blood donor population.
    To address these threats, technologies to sterilize cellular blood
    components are under development. Unfortunately, current sterilization
    methods also destroy the blood cells. Nevertheless, emerging strategies
    hold promise for pathogen inactivation that does not destroy the
    efficacy of cellular blood components. The AABB is pleased that the
    NHLBI recently co-sponsored with the FDA a workshop on pathogen
    inactivation and is funding research on viral and pathogen inactivation
    in cellular blood components with clinical trials set to begin in this
    year. Research in this area is also proceeding in the private sector.
    Donor Screening:
        Donor questioning is a critical step in maintaining a safe blood
    supply. Over the years, the questions presented to blood donors have
    been continuously revised, and today, questioning more directly
    addresses issues such as travel to regions with endemic disease
    patterns and sexual and drug use patterns. As a result of improved
    donor screening and education efforts, the volunteer donor pool is now
    primarily comprised of persons with lower infectious disease risks.\2\
    ---------------------------------------------------------------------------
        \2\ See GAO/PEMD-97-2 Blood Supply: Transfusion-Associated Risks.
    ---------------------------------------------------------------------------
        Despite this progress, additional research is needed to refine
    donor screening protocols. A report of the NHLBI funded Retrovirus
    Epidemiology Donor Study published in the March 26, 1997 issue of the
    Journal of the American Medical Association concludes that, although a
    stringent donor screening system is in place, a small percentage of
    donors with risk for infectious disease continue to donate blood.\3\
    Although sophisticated laboratory testing that is conducted on all
    donated blood would have detected virtually all HIV or other infections
    among most of these donors, it is disturbing that this link in the
    blood safety process appears to be incomplete. The AABB urges the NHLBI
    to fund research to develop more effective donor screening methods to
    emphasize the potential adverse impact on patient health of providing
    misleading or inaccurate information during the blood donation process.
    ---------------------------------------------------------------------------
        \3\ The study found that 186 of every 10,000 survey respondents
    (1.9 percent) reported some risk for infectious disease that would have
    resulted in deferral during the donation process had that risk been
    revealed.
    ---------------------------------------------------------------------------
                   peripheral blood stem cells and cord blood
        Red blood cells that carry oxygen, white blood cells that fight
    disease and platelets that stop bleeding are all are produced from a
    single progenitor cell known as a hematopoietic stem cell. Transplants
    of these stem cells are increasingly replacing bone marrow transplants
    for reconstituting bone marrow in chemotherapy patients. Because of
    their ability to multiply into many different types of blood cells,
    stem cells may also become the ultimate vehicle for curing diseases
    through gene therapy.
        Recently, it has been found that considerable quantities of stem
    cells can be collected from the blood stream. Stem cells are also
    increasingly collected from the blood remaining in the placenta and its
    attached umbilical cord after delivery of newborn babies. Although the
    total volume of blood is small and is normally discarded after birth,
    research indicates that the amount of stem cells is great enough to
    perform stem cell transplantation in children with leukemia and other
    diseases.
        The AABB is pleased that the NHLBI is funding a five-year multi-
    center study of the transplantation of stem cells collected from cord
    blood. To establish the necessary infrastructure for this research, the
    institute established a network of umbilical cord blood banks and
    transplant centers. This research will help determine the clinical
    efficacy of cord blood stem and progenitor cell transplants.
        This initiative is expected to pose new questions on the proper use
    of peripheral blood stem cells and cord blood. A variety of both
    biological and technical issues require continued investigation. These
    include proper immunologic and functional characterization of the stem
    cell, investigation of methods of stimulating stem cell production in
    normal donors, and optimum methods for the collection, processing and
    storage of stem cells. The AABB supports additional stem cell research.
                  immune modulation resulting from transfusion
        Blood transfusion involves the transplantation of living cells from
    the blood donor to the recipient. This procedure can suppress the
    transfusion recipient's immune system, thereby decreasing the
    recipient's defenses against postoperative bacterial infection and
    tumor recurrence. Preliminary research suggests that when standard
    blood components are modified in certain ways, such as by exposure to
    gamma irradiation or by removal of donor leukocytes or donor plasma,
    the immune altering effect of transfusion may disappear. The role of
    cytokines as mediators of transfusion-associated immune modulation may
    represent a fruitful avenue of research.
        Blood transfusion can also stimulate alloimmunization to HLA
    antigens, platelet antigens, and erythrocyte antigens, significantly
    impairing the ability to support transfusion-dependent patients. The
    AABB urges the Subcommittee to support research to prevent transfusion
    related immune suppression.
                        platelet biology and transfusion
        Blood platelets are needed to stop bleeding during surgery and to
    prevent bleeding in patients with platelet deficiencies. Platelet
    transfusion therapy allows greater treatment of cancer, organ
    transplant and trauma patients. Last year, over seven million units of
    platelets were transfused in the United States. Transfusions of blood
    platelets are increasing at a faster rate than any other blood
    component. However, because of the nature of this blood cell, platelets
    can be stored for only five days. Not only do platelets rapidly lose
    their biological activity during storage, but they must be stored at
    temperatures that can facilitate the proliferation of bacteria.
        Research into the basic biochemistry and energy requirements of
    platelets is needed to prevent platelet storage lesion and to assess
    platelet function in living patients. Research is also needed to
    improve immunological matches between platelet donors and recipients.
    In addition, we need clinical research on the optimum use of platelets
    so that limited supplies are used to their best advantage.
                        fiscal year 1998 funding levels
        The AABB is sensitive to the many demands on the discretionary
    funds in the federal budget. However, we view medical research funding
    as an investment in America's future competitiveness. Consistent with
    the Ad Hoc Group for Medical Research Funding, the AABB endorses a 9
    percent increase in NIH funding for fiscal year 1998. This level of
    funding would provide sufficient resources for the NIH to move toward
    its goal of funding at least one-third of the competing research
    project grant applications, rather than the current one-in-five.
        On behalf of the many scientists devoted to improved blood
    transfusion practice, the thousands of health care professionals who
    work daily to deliver blood services, and the millions of American
    transfusion recipients, the AABB thanks the Subcommittee for this
    opportunity to discuss federal support for research in transfusion
    medicine.
                                     ______

       Prepared Statement of Marshall A. Lichtman, M.D., Executive Vice
       President for Research and Medical Programs, Leukemia Society of
                                 America, Inc.
        Mr. Chairman and Members of the Subcommittee, thank you for
    providing me the opportunity to submit a statement regarding funding
    for biomedical research, including research on leukemia, lymphoma, and
    myeloma. I am the Executive Vice President for Research and Medical
    Programs of the Leukemia Society of America, Inc., a non-profit,
    voluntary health agency representing the health care and medical
    research interests of more than 450,000 patients, survivors, and their
    families. The Society's mission is to cure leukemia, lymphoma, and
    myeloma and improve the quality of life for patients and their
    families.
        As a result of the efforts of staff and volunteers in chapters
    across the country, the Leukemia Society raises funds to support more
    than $12 million in research grants annually, as well as a patient aid
    program, support groups, and information and referral services. The
    Leukemia Society has historically funded primarily basic research
    grants, but we are pleased to report that the Society is now also
    supporting a translational research program. That program is providing
    valuable support to some dynamic young researchers who are
    investigating promising new cancer therapies.
    Fiscal Year 1998 NIH Funding
        The Leukemia Society of America offers a sincere thank you to the
    Subcommittee for taking a leadership role in securing substantial
    increases for NIH in the past two years. Biomedical research will
    advance only if there is a strong research infrastructure, including
    well-equipped facilities at research institutions, well-trained and
    dedicated scientists, and adequate funds to support research. And
    biomedical research requires patience. Members of Congress must realize
    that their support for NIH must continue for the long term, because
    science is often unpredictable and slow--but sometimes also
    serendipitous. Congress, the public, and even scientists themselves
    must develop some tolerance for the lack of certainty about the course
    of science.
        A recent research advance in leukemia suggests that your patience
    and tolerance will be rewarded. A researcher who had synthesized a drug
    for an entirely different purpose discovered that the drug is a
    lifesaver for the small population--500 to 1000 patients each year--who
    have hairy cell leukemia. This drug puts 90 percent of all patients in
    remission, with much less toxic side effects than previous treatments.
        The Leukemia Society of America is in agreement with the
    recommendations of other research organizations that NIH funding be
    increased in fiscal year 1998 by 9 percent. We understand that this
    level of funding was identified by officials at the National Institutes
    of Health as the funding required to support the ongoing programs at
    NIH and allow them to fund promising research opportunities. The
    Leukemia Society understands that this is an ambitious goal for NIH
    funding, but we believe that level of funding would be invested wisely.
        Although the Leukemia Society of America has not endorsed any of
    the various resolutions calling for a doubling of the NIH budget or
    proposing the establishment of trust funds for the support of
    biomedical research, we applaud the efforts of Members of Congress to
    plan for the future and think creatively about funding of research.
    Research on Leukemia and Related Cancers
        Leukemia is often cited as a cancer research ``success story.'' In
    fact, there have been impressive improvements in the treatment of
    certain types of leukemia. The cure rate for childhood leukemia has
    improved from about 4 percent in 1960 to 76 percent today. Despite the
    strides we have made in the treatment of certain forms of leukemia,
    more than 57,000 people die each year from all hematologic cancers,
    more than from any cancer except lung cancer. For adults with leukemia,
    myeloma, and many lymphomas, clinical outcomes have not improved
    significantly during the last 20 years. Therefore, our work is far from
    done.
        We do not advocate earmarked funding for leukemia research. We have
    a great deal of confidence that the scientific marketplace will reward
    the best research ideas and that the leadership at NIH will capitalize
    on new research developments in ways that are most beneficial to
    researchers and the American public. The Leukemia Society of America
    recently decided, after reviewing its own research portfolio of
    primarily basic research, that it needed to increase its emphasis on
    the transfer of the findings of the bench to the bedside. Therefore, we
    are now funding a translational research program.
        We believe there are exciting new possibilities--the result of this
    nation's basic research investment--for improving the treatment of
    cancer, and the work to translate these good ideas into treatments must
    be adequately funded. This type of research must receive more
    attention--and more funding--from the NIH.
        The potential of translational research is great. In the area of
    leukemia research, immunotherapy and techniques for modifying the
    genetic basis of cancer are two exciting new research avenues. In
    leukemia, we have the advantage of knowing which genes start the
    process of cancer development, and therefore we know which genes we
    must interrupt in order to prevent disease. That sort of genetic
    therapy--not the classic gene therapy--might be combined with radiation
    or chemotherapy to improve the patient's treatment options and outlook.
    We have only recently begun to understand that immune cells might be
    used to attack cancer cells. If this therapy can be developed
    successfully in patients, it might also be used in combination with
    more traditional therapies.
        The Leukemia Society will continue--and perhaps even expand--its
    translational research program. But real progress in translating basic
    research to treatment depends on the commitment of the NIH. The
    uncertainty of science may be even more pronounced in clinical
    research, where there is not a high level of assurance about which
    treatment will work. However, this research is absolutely critical to
    our shared goal of helping those who have cancer or other serious
    diseases. We encourage the NIH to strengthen its commitment to patient-
    oriented cancer research.
        The Leukemia Society appreciates the opportunity to submit
    testimony for the record.
                                     ______

       Prepared Statement of Mary Kaye Richter, National Foundation for
                             Ectodermal Dysplasias
        All of us yearn to live long life spans unimpeded by anything that
    demeans our quality of life. We want to greet each new day with all of
    our faculties intact and with the knowledge that we will be able to
    function at 100 percent throughout the course of the day.
    Unfortunately, those individuals challenged by birth defects, systemic
    conditions and diseases and disorders of every known description are
    often limited in their abilities to participate fully in life. Their
    only hope lies in scientific research that can improve understanding of
    a particular condition and enhance treatment, if unable to provide a
    cure. This testimony has been written on behalf of individuals affected
    by ectodermal dysplasia (ED) to illustrate the importance of the
    National Institutes of Health, in general, and the National Institute
    of Dental Research and the National Institute of Arthritis,
    Musculoskeletal and Skin Diseases, in particular, in enabling quality
    of life improvements in their lives.
        Charles Darwin was among the first to recognize this interesting
    group of syndromes. His perception was that the condition only affected
    males who had received an errant gene from their mothers. What Darwin
    did not know was that the ectodermal dysplasias are actually a broad
    group of disorders affecting both men and women in varying degrees.
    Ectodermal dysplasia is a genetic disorder primarily affecting the
    hair, nails, sweat glands and teeth with effects to other body
    structures as well. There are 150 variations of the condition ranging
    from mild to devastating in their effects. Even though ED was first
    identified more than 200 years, improvements in our understanding of
    the conditions were not seen until the last fifteen years, largely due
    to efforts at the National Institutes of Health.
        While a lack of hair and unusual nails can be troublesome, those
    problems pale in comparison to the inability to perspire and
    extraordinary dental complications associated with ED. Because
    understanding of the conditions was so poor, individuals in prior
    generations suffered intense humiliation because of their appearance.
    With just a few fang-shaped teeth in their mouths, these individuals
    were called all sorts of names from ``monster'' to ``Dracula''. The
    dental profession was often unsure as to the type and timing of
    treatment and patients were subjected to care based on guess rather
    than on knowledge. The results were often tragic.
        Equally problematic was how to keep the individual cool. Often
    subjected to living in cellars, affected individuals who lived earlier
    in this century were uneducated and unable to participate fully in
    life. Although answers to our questions about non-functioning sweat
    glands still do not exist, improvements in management techniques have
    enabled today's generation of children affected by ED to fare much
    better. While they must be ever vigilant to problems related to
    overheating, they can function much like their peers with some,
    relatively minor, adjustments to their lifestyles.
        Although once thought to be a population in which mental
    retardation was a common feature, today's generation of children who
    are affected by ED can have high expectations for all that life offers.
    While minor adaptations in life style may always be necessary, they can
    expect success in the classroom, at work, at home and in whatever they
    choose to do in life.
        How have such great strides been made, in so little time and at so
    little expense? The answers await in the remainder of this document,
    however, it is without question that efforts at the National Institutes
    of Health have had much to do with improvements.
        The first dramatic change came about through a program at the
    National Institute of Dental Research to improve the oral condition of
    individuals affected by ED. Forty persons above the age of 13 were
    selected to have osseointegrated implants placed in their jaws in
    addition to another smaller group between the ages of seven and 10.
    Because of the congenital absence of teeth, the alveolar ridge in these
    individuals is often diminished, greatly compromising their ability to
    wear traditional dentures. In essence, the implants are titanium screws
    which are imbedded in the jaw bone to which prosthetics are ultimately
    attached. With dentures, bite force is often limited to 15 percent or
    less of normal. However, implants improve that number to 85 percent or
    more. The bonus in this project is that much was learned about the use
    of implants in children and other adults. Any individual who loses a
    permanent tooth can now have it replaced with an implanted tooth with
    the knowledge that the procedure is safe and efficacious.
        Funding from the National Institute of Arthritis, Musculoskeletal
    and Skin and the National Institute of Dental Research also was greatly
    responsible for the identification of the gene which causes the most
    common type of ED, X-linked recessive hypohidrotic ectodermal
    dysplasia. The identification of a particular gene involves many years
    of research and discovery. Through research grants and access to
    patients affected by H.E.D., Dr. Jonathan Zonana, at the Oregon Health
    Sciences University, was a key figure in the identification of this
    particular gene. In collaboration with Dr. Juha Kere of the University
    of Helsinki and Dr. Anand K. Srivastava of J.C. Self Research Institute
    of Human Genetics, the principle researchers, Dr. Zonana was able to
    provide a critical piece to solve this genetics puzzle. With the
    identification of the gene, additional research will be necessary to
    identify errant proteins which may then be altered at which point
    discussions about possible cures can commence. A small investment in
    time and money has enabled the most important scientific breakthrough
    to date.
        Equally important was a workshop held in November of 1996. It was a
    multi-institute effort with cooperation from the N.I.D.R., N.I.A.M.S.,
    N.I.C.H.D. and the Rare Disease Office at the N.I.H. With leadership
    from Dr. Hal Slavkin, the Director of the N.I.D.R., the various
    institutes came together to sponsor a workshop devoted to the
    ectodermal dysplasias. Interested researchers from throughout the
    United States, Canada and Europe participated. Through the course of
    the workshop, it became quite clear that the ectodermal dysplasias
    could provide a unique scientific opportunity which may lead to
    improvements in the lives of those affected by these particular
    conditions as well as to shed a great deal of light on human
    development and developmental biology which, of course, affects every
    human being. Unlocking the doors to tooth development, hair follicle
    function and sweat gland genesis will be of importance to individuals
    affected by a wide ranging group of disorders from alopecia to multiple
    sclerosis or individuals with male pattern baldness. Beyond that, this
    landmark meeting was a dynamic example of the possibilities for
    cooperative efforts among multiple institutes.
        While our understanding of the ectodermal dysplasias has improved,
    much remains to be learned. One primary concern is the classification
    of the ectodermal dysplasias. Presently, a wide ranging group of
    conditions are included, however, the boundaries are often vague
    complicating diagnosis and treatment. When a specific diagnosis cannot
    be made, appropriate genetic counseling is impossible thereby greatly
    complicating family planning issues. Further study is a must so that
    these conditions can be identified a part from other similar but
    fundamentally different syndromes.
        It is probable that a type of ectodermal dysplasia with a
    significant immunosuppression feature also exists. A number of cases
    have been identified throughout the United States and elsewhere. Care
    for these children is often very complicated and frequently results in
    death. The circumstances they endure defy description and tear at the
    heart. Because the skin is a key component to the immune system and is
    the structure most affected in the ectodermal dysplasias, it would
    appear to be obvious that this patient group could, once again, yield
    important information for themselves as well as for the remainder of
    humankind. It is also possible that a more subtle form of ED exists
    which has a greater incidence rate than that of hypohidrotic ectodermal
    dysplasia, currently thought to be the most common type. While this
    type of ED may not be as devastating as others, more must be learned so
    that affected individuals can be more frequently diagnosed and the
    genetic implications better understood.
        While we have learned much about the possibilities for
    osseointegrated dental implants, prolonged follow-up is needed to
    determine the effects of implants over time. The ectodermal dysplasia
    subjects that participated in the original study should be followed to
    further enhance what has already been learned. Other issues of concern
    include severe problems with reflux, carrier detection, breast
    development and lactation, tear dysfunction, respiratory disease and
    the mapping of genes for the other 149+ types of ED which remain to be
    addressed.
        The efforts of the National Institute of Dental Research have been
    pivotal in the improvement of the lives and lifestyles of those
    affected by ectodermal dysplasia. As a parent of such a child, I cannot
    begin to adequately express my appreciation to the Congress for the
    financial support for the N.I.D.R. and the other institutes at the
    N.I.H. which has enabled such remarkable progress in such a short time.
    Unless you have been the parent of a child affected by a rare disorder,
    you have not experienced the extraordinary maze which must be
    confronted when such a diagnosis is made. Where does one turn for help?
    What should be done? Who can best help? Does anyone know anything? All
    of those questions are typical of those we experienced. However, now we
    look ahead with hope to a brighter future.
        Your support of $212,561,000 during fiscal year 1998 for the
    National Institute of Dental Research will continue to solve problems
    associated with conditions like the ectodermal dysplasias in addition
    to supporting wide ranging efforts designed to improve the lives of
    every citizen in this country. Through outstanding intramural and
    extramural research as well as services like the National Oral Health
    Information Clearinghouse, the N.I.D.R. continues to give millions and
    millions of Americans a very good reason to smile.
                                     ______

         Prepared Statement of David Jaffe, the Jaffe Family Foundation
        Thank you Mr. Chairman and members of the Subcommittee for allowing
    me the opportunity to testify. I am David Jaffe. I serve on the board
    of directors of the Jaffe Family Foundation which my parents, Elliot
    and Roz Jaffe, created. I am the father of three young children with
    food-related allergies. My only nephew, my brother Richard's son, also
    has food allergy.
        In 1996, the Jaffe Family Foundation decided to make a significant,
    long-term commitment to the area of food allergy. We made this decision
    because of our own experience, growing evidence of increasing incidence
    of food allergy, and the lack of attention and resources in this field.
        Food allergy is an adverse reaction to food involving the immune
    system. Food allergies are estimated to affect between 3 and 6 percent
    of children and these numbers are on the rise. While some children will
    outgrow food allergies, others will continue to suffer throughout their
    adulthood. Shellfish, eggs, cow's milk, soy, wheat, and tree nuts are
    the cause of most food allergic reactions. Although symptoms of food
    allergic reactions are often mild, it is estimated that 100 people each
    year die of an allergic reaction to food, and reports of death from
    food-allergic reactions after ingestion of even minute quantities of
    food are increasing.
        My own children are at risk of having a fatal reaction to peanuts
    and have, after being unintentionally exposed to food with peanuts in
    it, suffered reactions which fortunately were recognized early enough
    so that they could be treated with medication. These experiences,
    however, created an awareness of how serious the situation can become.
    As a parent, I can tell you that my children's food allergies have
    affected my family's life in ways that I would never have imagined. My
    wife and I had several years of sleepless nights as we tended to our
    children while they suffered through atopic dermatitis, a common
    condition resulting from food allergy. Over a four year period my wife
    and I grew accustomed to drawing oatmeal baths every two hours
    throughout the night just so my oldest daughter could feel relief from
    the intense itching and discomfort. We also take strict precautions by
    providing our children with their own food whenever they leave the
    house to attend a playgroup.
        Right now, the only way to protect a child who suffers from food
    allergies from an allergic reaction is to avoid the offending food, and
    this requires constant vigilance on the part of food allergy sufferers
    and their families. It often means keeping the food out of your home
    entirely to avoid accidental contamination. Restaurants, schools,
    visits to friends' homes, sporting events--anywhere that your child
    might be exposed to the food--are additional sites of potential
    exposure. And it is not enough to tell your child to avoid the food to
    which she or he is allergic, because many of these foods are commonly
    used as ingredients in items that most people would never suspect.
    Peanut butter might be used, for example, to thicken spaghetti sauce,
    as one person who suffers from peanut allergy discovered after
    beginning to eat a plate of pasta. All too often, full information
    about ingredients is not available even to those extremely cautious and
    assertive customers who carefully question waiters. Even well informed
    waiters and chefs cannot spot the cross-contamination of food, which
    results from careless handling in the manufacturing plant or one food
    inadvertently touching another.
        I want to express my appreciation to you, Mr. Chairman, and to the
    other members of this committee for the work you have done in making
    sure that despite the need to find savings in federal programs, the
    funding for basic science research at the National Institutes of Health
    (NIH) is maintained and even increased each year. I thank you for your
    leadership and urge you to continue.
        The basic scientific research that NIH supports is critical to the
    advancement of the field of food allergy research. For example, a
    recent scientific meeting concluded that developing an understanding of
    the molecular nature of IgE-dependent histamine releasing factor and an
    understanding of the genetics of allergic disease are key to
    understanding and curing food allergy.
        As you know, innovative approaches are sometimes necessary to bring
    more focus and attention to issues that have previously not been
    addressed through NIH research. I would like to talk to you today about
    why I believe that is now necessary in the field of food allergy.
        Despite the severity of this problem, very little attention or
    resources are being directed toward finding solutions to the complex
    scientific issues connected to food allergy. We do not have answers to
    some of the most basic scientific questions such as why some people
    develop food allergies while others do not or why some children outgrow
    food allergies and others do not. As a result, we have no idea how to
    cure food allergy. Furthermore, pediatricians learn very little about
    diagnosis or treatment of food allergy, causing children and their
    families long periods of frustration, distress, and illness before a
    diagnosis is made. What is worse, very little research that could yield
    solutions to these problems has been supported in the past either by
    NIH or by private institutions.
        Over the last two years, the Jaffe Family Foundation has begun a
    long-term effort to change this. We are contributing both financially
    and with our own time. We believe in working collaboratively with
    organizations, including industry, that share our commitment to find
    ways to treat, prevent, and cure food allergy. Our program is built on
    partnerships with three important institutions in this field: the NIH,
    the Food Allergy Network, a vital resource for consumers and
    physicians, and a soon to be announced collaboration with an academic
    medical center in New York City where we plan to establish a national
    center of excellence for food allergy research, clinical practice, and
    patient and public education.
        Last summer, we joined with the American Academy of Allergy,
    Asthma, and Immunology, The Food Allergy Network, The International
    Life Sciences Institute, and the National Institute of Allergy and
    Infectious Disease to cosponsor a historic scientific meeting at the
    NIH. The purpose of the meeting was to stimulate dialogue around the
    issue of food allergy and to explore and encourage new research in the
    field. Twenty-seven leading scientists from the field of food allergy
    and the related fields of genetics and immunology met to review state-
    of-the-art information about food allergy and related basic science
    research. Several key research priorities were identified at this
    meeting. The Executive Summary which describes these findings and a
    participant list are attached to my testimony.
        The meeting last summer created an unprecedented potential for
    advancement in the field. To make it possible to take full advantage of
    this potential, the Jaffe Family Foundation is working with three of
    the institutes at the NIH to develop a partnership that will combine
    our private funds with the NIH's public funds for the purpose of
    supporting research on food allergy. Public-private partnerships for
    research such as this one are still a recent development, and figuring
    out the best way to structure and implement them presents challenges to
    all of us, but it brings opportunities as well.
        As a private citizen with a demonstrated commitment to scientific
    research, I believe that public entities need to maintain the openness
    and flexibility that will allow them to respond to the interests of
    private partners without undercutting the scientific basis for research
    funding decisions. I recognize and strongly support the evaluation of
    research for its scientific merit by rigorous and objective standards.
    At the same time, I believe that the development of public-private
    partnerships creates an opportunity for NIH to reexamine the mechanisms
    it uses for evaluation and to consider whether there are new ways to do
    this that might lead to more funding in new research areas.
        I hope, Mr. Chairman, that this Committee will allocate appropriate
    funds to the NIH so that it will be able to continue its important
    work. I also hope that you will support the efforts of the NIH
    officials who are trying to maximize their limited funds by reaching
    out to private partners with an interest in scientific research.
    Alliances between the public and private sectors may be the best way to
    enhance the federal commitment to health research and to enable federal
    dollars to go further.
        In conclusion, Mr. Chairman, food allergy is a very serious problem
    that affects many children and adults. Very little is known about food
    allergy and, despite the seriousness of the problem, current efforts to
    increase resources and attention are only the beginning. There must be
    more research to increase our knowledge about the very serious problem
    of food allergy and improve the medical system's ability to respond to
    people suffering from allergies to food. The Jaffe Family Foundation
    has dedicated significant financial and personal resources to this
    field. We are committed to working in a public-private partnership with
    the NIH to expand the research that is being done to improve the health
    and welfare of people who suffer from food allergy. I ask for your
    support of that partnership through your continued commitment to
    funding of basic science research at the NIH. Thank you very much.
                                     ______

                  Prepared Statement of In Defense of Animals
                                  introduction
        As Congress considers 1998 appropriations for the National
    Institutes of Health (NIH), In Defense of Animals (IDA) feels it
    imperative that the House Committee on Appropriations consider waste,
    fraud and abuse in current NIH spending programs. As an example, we
    would like to call your attention to two egregiously wasteful NIH
    research-related programs. In our experience, these programs are just
    symptoms of the overall problem of wasteful NIH spending on needless
    research that does more to advance the interests of individual
    scientists and research institutions than it does the interests of
    public health.
                    nih support for the coulston foundation
        The NIH currently allocates in excess of $2.1 million annually to
    The Coulston Foundation (TCF), a private, New Mexico-based primate
    laboratory whose troubling history includes: repeated violations of the
    Animal Welfare Act; scientific misconduct; repeated falsification of
    records; and an anachronistic, hostile view of chimpanzees.
        With an estimated 600 chimpanzees--almost one-half the total in all
    U.S. laboratories--TCF currently controls the world's largest captive
    chimpanzee colony. NIH's continued expenditure of taxpayer dollars on
    this facility whose dubious record has prompted strong criticism from
    mainstream scientists and animal protection groups, as well as multiple
    investigations by the U.S. Department of Agriculture, cannot be
    justified.
    Animal Care Problems at TCF
        In 1995, the USDA filed formal charges against TCF for multiple
    violations of the Animal Welfare Act (``the Act''). Violations included
    the overheating deaths of three chimpanzees in 1993 and the deaths from
    water deprivation of four monkeys in 1994. In 1996, TCF settled these
    charges by agreeing to pay a $40,000 fine--the second largest ever
    levied against a research institution in the history of the Act. As
    part of the settlement, TCF agreed to ``cease and desist'' violating
    the Animal Welfare Act. With the ``unintended'' deaths of two young,
    healthy chimpanzees in January and March of 1997, TCF appears to have
    violated this cease and desist order, as circumstances surrounding
    these deaths indicate extreme negligence and further violations of the
    Act. Additional charges are likely to result from current USDA
    investigations of TCF.
        Animal care problems at TCF are long-standing. In 1994, an NIH site
    visit team cited TCF for deficiencies in veterinary staff. Today, with
    the recent departure of the one veterinarian whom NIH deemed qualified
    to care for the facility's hundreds of chimpanzees and monkeys, the
    situation has intensified. In fact, seven veterinarians with combined
    decades of clinical experience have left TCF since May 1994. The
    deteriorating situation prompted the USDA to express ``official
    concern'' about TCF's veterinary staffing earlier this year.
        In summary, TCF's lack of adequate veterinary staffing and repeated
    violations of federal law have contributed to a worsening animal care
    situation that has seen the ``unintended'' deaths of at least 25 non-
    human primates at the facility since October 1993.
    Scientific Misconduct
        U.S. News & World Report reported in August 1995 that Coulston
    employees had falsified data in the study of remifentanil, a painkiller
    for women in labor. The experiment was designed to test the physical
    and behavioral effects of the drug on infant monkeys. IDA subsequently
    discovered that the falsification occurred in the height and weight
    data taken from the infants. Because the physical effects of the drug
    were an integral part of the study, falsification of such results would
    constitute extremely serious scientific misconduct, and would have
    enormous ramifications for the health and well-being of pregnant women
    and their babies. The USDA has already found that TCF animal caretakers
    falsified daily care logs during the course of this remifentanil study.
        The record clearly shows that TCF has repeatedly failed to adhere
    to federal regulations regarding the conduct of scientific research.
    TCF is Out of Step with the Mainstream Scientific Community
        At present, there is consensus in the scientific community that a
    surplus of chimpanzees available for research exists. The NIH itself
    has issued a directive to curtail breeding at the five federally-
    supported chimpanzee breeding centers in the U.S. At the behest of NIH
    director Harold Varmus, the National Academy of Sciences has convened a
    panel to make recommendations for the long term care of chimpanzees no
    longer needed for research.
        At a time when most primate centers are attempting to reduce their
    chimpanzee populations, TCF head Fred Coulston is actively increasing
    the number of chimpanzees under his control. Of Dr. Coulston's efforts,
    Dr. Thomas Insel, Director of the Yerkes Primate Center in Atlanta
    said, ``I'm amazed that anybody would be trying to expand a chimp
    empire.'' (New York Times, February 4, 1997) Dr. Coulston's zest for
    expansion may be tied to his self-professed ``unusual view'' of
    chimpanzees, as ``models'' for ``toxicology/pharmacology.'' As reported
    in the New York Times, Dr. Coulston's ideas about chimpanzees--
    humankind's closest genetic cousin--clearly place him outside the
    mainstream of science.
    NIH Support for TCF
        Time and time again, Dr. Coulston has turned to the federal
    government to support his burgeoning private chimpanzee empire. And,
    despite TCF's scientific transgressions and repeated violations of
    federal law, the NIH has rewarded TCF handsomely:
        National Center for Research Resources (NCRR) Chimpanzee Breeding
    and Research Program (5-U42RR-0358-07).--$3 million in direct costs,
    with another at least 50 percent in indirect costs, since 1993. In
    addition, to being underwritten by NIH, TCF's breeding program is
    subsidized by the Food and Drug Administration (FDA) which pays upwards
    of $60,000 per chimpanzee used in FDA studies (FDA contract Nos. 223
    901 004 and 223 871 004). Why TCF is receiving money from NCRR and the
    FDA for chimpanzee breeding, especially when there is a surplus of
    chimpanzees for research, is a question that Congress should answer.
        National Cancer Institute (NCI).--$861,479.00 for the period 4/1/96
    through 3/31/97 to support 12 chimpanzees on an NIH AIDS study.\1\
    ---------------------------------------------------------------------------
        \1\ These payments are made as part of one subcontract (No.
    6S1655). TCF has submitted budgets to both NCI and NIAID for
    maintaining 24 chimpanzees, including clinical testing and pathology.
    The total submitted budget, excluding overhead, is less than $150,000.
    The remaining $1.3 million is unaccounted for. Is TCF charging the
    federal government $1.3 million in overhead? The standard, fully-loaded
    (including overhead) per diem rate for maintaining chimpanzees is $40/
    per day. TCF, by contrast, is charging a per diem of $180 per day to
    maintain chimpanzees. This appears to be a straightforward case of
    price gouging the government, which we believe mandates a serious
    Congressional investigation. Since July of 1993, TCF has received over
    $8 million on this subcontract alone; it is not yet known what
    financial figures from periods prior to 4/1/96 will show.
    ---------------------------------------------------------------------------
        National Institute on Allergy and Infectious Disease (NIAID).--
    $718,152.00 for the period 4/1/96 through 3/1/97 to support 12
    chimpanzees on an NIH AIDS study.
     Coulston Attempt to Secure Further Federal Subsidy
        One of the most scientifically baseless, corporate welfare uses of
    limited research money would be TCF's proposed ``National Center for
    the Study of Aging in Primates.'' TCF announced its intention to obtain
    federal money for such a center in March 1996--less than one month
    before NCI and NIAID cut by approximately 50 percent their support of
    AIDS chimpanzees at TCF, from $2.9 million for the period 4/1/95
    through 3/31/96 to $1.5 million for the period 4/1/96 through 3/31/97.
    Is it coincidental that TCF announced its proposal to obtain federal
    money less than one month before it lost $1.5 million in federal
    support? When one considers the absolute total lack of scientific,
    medical or public policy merit in TCF's proposal, the answer seems
    clear. In fact, it appears to be TCF's latest and perhaps most
    transparent ploy to obtain a ``sweetheart deal'' from the federal
    government.
        TCF has a history of obtaining such ``sweetheart deals'' from both
    publicly- and privately-funded entities. For example, over the last
    four years, it has obtained millions of dollars, hundreds of
    chimpanzees and buildings and equipment from New Mexico State
    University and New York University. In 1995, TCF attempted to get
    Congress to give it ownership of 150 Air Force chimpanzees and a new
    $10.5 million, taxpayer-funded housing facility. That proposal was
    defeated, in part because of the serious questions raised about TCF's
    dubious record of research and animal care, as well as the lack of an
    open bidding process. Indeed, TCF attempted to become the ``sole
    source'' for this giveaway, just as NIH ``sole-sourced'' to TCF its
    AIDS chimpanzee subcontracts discussed above.
        The scientific, medical, financial and public policy arguments
    against the very existence of TCF's proposed Aging Center, let alone
    for taxpayer funding of it, are overwhelming:
      --TCF lacks any expertise or experience in aging research, has no
            current NIH peer-reviewed, investigator-initiated grants in any
            field of scientific research, including aging, and key
            personnel have no aging-related scientific publications;
      --The National Institute on Aging--which funds over 2,000 aging-
            related grants--funds absolutely no studies involving
            chimpanzees and the diseases associated with aging, nor does
            Medline link the search term ``chimpanzees'' with aging-related
            illnesses, clearly indicating that chimpanzees are not widely-
            accepted animal models for aging research;
      --More than 150 aging research centers already exist in the U.S.--28
            for Alzheimer's Disease alone. Taxpayer funding for TCF could
            take money away from those far more worthy centers with
            extensive expertise in aging that are already conducting
            important research. In fact, the American Federation for Aging
            Research warned in March 1996 that proposed cuts in the NIA
            budget ``threaten [aging] research'' and human health;
      --TCF has a documented record of animal abuse, alleged scientific
            misconduct, multiple violations of the Animal Welfare Act,
            repeated falsification of records, formal USDA charges,
            repeated failure to adhere to federal law, and is currently the
            subject of USDA investigations regarding the entirely
            preventable deaths of additional young, healthy chimpanzees;
      --TCF is not accredited by the American Association for Accreditation
            of Laboratory Animal Care (AAALAC), and its veterinary staff's
            lack of clinical experience and deficient care have prompted
            the USDA to express its official concern.
        According to the February 4, 1997 New York Times, TCF is attempting
    to obtain a special Congressional appropriation for its proposed Aging
    Center. Considering the overwhelming arguments against this proposal,
    it is perhaps no surprise that, in lobbying Congress for taxpayer
    funds, TCF is atttempting to bypass the normal, scientifically-accepted
    channels for federal funding. Instead of submitting the proposal for
    peer review, most appropriately at the National Institute on Aging, as
    thousands of researcher do each year, Coulston is attempting to get a
    special $45 million appropriation, which would no doubt be buried in a
    complex government spending bill. It is unlikely that TCF's proposed
    Aging Center would withstand objective peer review by experienced aging
    researchers.
        If Congress is interested in a $45 million appropriation of
    taxpayer money for aging research, then we suggest that the money could
    be far better spent at any of the existing, credible aging research
    centers, of which there are over 150 in the U.S. TCF's proposed
    ``National Center for the Study of Aging in Primates'' is simply
    corporate welfare at its most obvious, a naked attempt to force U.S.
    taxpayers to permanently subsidize--year after fiscal year--Dr. Fred
    Coulston's struggling private chimpanzee empire and to fulfill his
    publicly stated goal of making TCF the ``sole source of chimpanzees for
    research.''
        nih support for the monkey crack-smoking experiments of ron wood
        As of 1996, the NIH, through its member institute the National
    Institute on Drug Abuse (NIDA) has awarded $3.2 million in research
    grants to psychologist Ron Wood, formerly of New York University (NYU)
    and currently employed by the University of Rochester. Dr. Wood's drug
    addiction experiments on primates and other animals have long been
    controversial. Scores of physicians and drug treatment experts have
    condemned them as irrelevant to human drug abuse and wasteful of nearly
    one-half million dollars annually. His current NIH grant is entitled
    ``Behavioral Pharmacology of Abused Inhalants: Crack'' (R01 DA05080-
    08). The experiments involve placing monkeys in restraining devices,
    strapping monkeys to an elaborate $250,000 ``crack pipe'' and forcing
    the animals to inhale the smoke from crack cocaine.
    Federal Investigations Reveal Scientific Misconduct/Animal Welfare
            Violations
        In October 1993, based on internal documentation obtained from
    whistleblowers, In Defense of Animals (IDA) filed formal complaints
    with the U.S. Department of Agriculture (USDA) and the NIH's Office for
    Protection from Research Risks (OPRR) alleging inadequate veterinary
    care and program-wide abuses at NYU during the conduct of Dr. Wood's
    experiments. Both agencies upheld many of IDA's allegations. In fact,
    the USDA filed formal charges against NYU in April 1995 for 378
    violations of the Animal Welfare Act committed in Dr. Wood's
    laboratory. In addition, OPRR found a veritable laundry list of Public
    Health Service (PHS) Policy violations committed by NYUMC and Dr. Wood.
    In 1996, NYU settled USDA charges for Wood's and other violations by
    agreeing to pay $450,000--by far the largest fine ever assessed against
    a research institution for violations of the Animal Welfare Act.
    (Interestingly, NYU, which for years vigorously defended Wood's
    research and denied any wrongdoing, also recently agreed to settle with
    the U.S. Attorney's Office charges that it had overbilled the federal
    government on research overhead. The settlement included a $15.5
    million dollar fine--by far the largest ever paid by a research
    institution in the ongoing research overhead scandal.)
        Evidence accumulated during the two federal investigations of
    Wood's research revealed shocking negligence, misconduct and cruelty in
    Dr. Wood's laboratory, including documentation that Dr. Wood:
      --Deprived monkeys of water for 21 hours/day, resulting in thirst so
            severe that animals were forced to dip their tails in urine
            collection pans in a desperate search for moisture. Wood
            violated federal law by failing to obtain permission from NYU's
            research oversight committee for this prolonged water
            deprivation regimen;
      --Allowed animals in his lab to become deathly ill from infections
            before seeking veterinary care;
      --Used sick monkeys in experimental procedures, in some cases only
            days after invasive surgeries from which they would never
            recover, fatally compromising not only the health of the
            animals, but also the validity of his research results;
      --Allowed surgical procedures to be performed on monkeys and guinea
            pigs by incompetent veterinary personnel, resulting in animal
            deaths;
      --Failed to properly monitor the health of monkeys in his lab;
      --Made misrepresentations to the NYU research oversight committee and
            to NIDA about various aspects of his research; and
      --Failed to keep accurate or adequate experimental or clinical
            records on his animals.
        In August 1995, following the USDA charges, Dr. Wood's monkey
    crack-smoking experiments came to an end. At that time, Dr. Wood's NIDA
    grant expired, he took an ``indefinite'' leave of absence from NYU and
    his laboratory there permanently closed.
        By the fall of 1996, however, Dr. Wood re-surfaced at the
    University of Rochester and NIDA re-funded Dr. Wood's experiments to
    the tune of $420,000 per year, despite overwhelming evidence that Dr.
    Wood had committed scientific fraud as well as animal abuse.
    NIH Decision to Re-Fund Dr. Wood's Research
        Critics of federal research funding have long maintained that once
    a researcher is on the federal gravy train, he or she is virtually
    guaranteed lifetime support. Even former NIH director Bernadine Healy
    remarked on this phenomenon: ``You get the sense that the NIH was a
    social security agency for scientists,'' she said in New York Times,
    November 1, 1992. Certainly, there is no better example than the case
    of Ron Wood.
        In defending its decision to re-fund Wood, NIH has claimed that its
    peer review panels have deemed Wood's research to be ``outstanding.''
    However, this assessment does not square with the formal charges
    against NYU for violations of federal law committed by Dr. Wood, the
    vast amount of documentation impugning the scientific validity of Dr.
    Wood's research, and the failure of Dr. Wood to publish a single
    scientific paper in more than eight years on the results of his crack
    experiments on monkeys. (Dr. Wood's experiments are also currently the
    subject of a federal False Claims Act lawsuit, brought by Jan Moor-
    Jankowski, M.D., a world-renowned medical primatologist, member of the
    prestigious French Academy of Medicine, and former member of the NYU
    research oversight committee charged with overseeing Dr. Wood's
    research. That lawsuit asserts that ``Dr. Wood's experiments are so
    scientifically flawed in conception and execution as to constitute
    fraud.'')
        The fact that NIDA peer reviewers apparently recommended re-funding
    of Dr. Wood's research indicates a very serious problem. If the
    reviewers saw the documented evidence of Dr. Wood's scientific and
    veterinary misconduct, and recommended refunding his research anyway,
    then it appears that these peer reviewers are not sufficiently
    objective as to render honest recommendations about the merit of
    scientific research proposals. If, on the other hand, the peer review
    team did not review the evidence, the peer review system is failing
    because reviewers are making decisions based on grievously incomplete
    information. Whatever the answers, this situation does not bode well
    for the integrity of the National Institute on Drug Abuse or the
    integrity of the peer review process. If the peer review team was aware
    of the documentation cited above and still deemed Dr. Wood's research
    ``meritorious'' of funding, then the peer review process is
    demonstrated to be incapable of providing objective assessments of
    worthy research projects. If the peer review team made determinations
    about Dr. Wood's research in the absence of the results of federal
    investigations into his research, then the NIH has failed utterly to
    provide oversight to federally-funded animal research as required by
    law.
        Since Dr. Wood's research is underwritten by significant amounts of
    tax dollars, we believe that it is incumbent upon the Congress to
    examine NIDA's actions in this matter as this case demonstrates NIH's
    utter failure to provide proper oversight to federally-funded research
    as required by law.
                 nih support for cat studies of alan d. miller
        For fiscal year 1996, researcher Alan D. Miller at Rockefeller
    University received well over a half million dollars from the NIH to
    pursue his two research interests. Both of his projects stem from a 35
    year-long project conducted by his mentor and colleague, Victor J.
    Wilson, also at Rockefeller University. Project R01 NS20585, now in its
    twelfth year, receives $332,354 annually from the National Institute of
    Neurological Disorders and Stroke to trace the neurophysiological
    pathways of the vomiting reflex in the cat. Dr. Miller's second grant,
    Project R01 DC02644 received $322,979 from the National Institute on
    Deafness and other Communication Disorders to study the vestibular
    control of respiration in the cat. These two projects combined totaled
    $655,333 in fiscal year 1996 alone.
    Vomitting Reflex in the Cat
        Dr. Miller's vomiting project primarily examines a phenomenon he
    calls ``fictive vomiting,'' in which he takes neural recordings of the
    cells which would produce vomiting under normal circumstances. However,
    his experimental design is far from normal. The cats used in Dr.
    Miller's experiments are intubated, wired up with electrodes, drugged,
    shocked and otherwise manipulated, subjected to brain surgery wherein
    their brains are separated from their spinal cords, suspended and
    restrained in stereotaxic devices, and paralyzed with the use of
    neuromuscular blocking agents which essentially paralyze the muscles
    involved with vomiting. Thus, the animal is prevented from vomiting,
    but rather the brain is stimulated in a way similar to the way it might
    react if the cat was vomiting. ``Control cats''--neither decerebrate
    nor paralyzed--have also been used. One of these unfortunate animals
    was forced to vomit 97 times over a three and one-half hour time
    period.
        All of Dr. Miller's work is done to gain an understanding of the
    physiological and anatomical actions associated with a process that
    cannot and does not occur in the experimental animal, nor in the human
    being to which he claims his results apply.
        After reviewing the research of Alan D. Miller, neurologist Robert
    S. Hoffman wrote: ``One can see from reviewing his results that not
    much has been accomplished by Dr. Miller's work in this area over the
    last 11 years and at a cost of more than $2.5 million. Whatever
    conclusions Dr. Miller has arrived at in his studies were already
    `intuitively obvious'.'' Indeed, in a meeting between In Defense of
    Animals and Rockefeller University officials in February 1997, IDA
    requested that the university produce journal citations of Dr. Miller's
    research in human medical journals which point to this research as
    being clinically useful. We have made this same request in writing
    twice following our meeting and have still not received a response. Our
    search of the clinical literature has been unable to locate any such
    citations.
        After a thorough analysis of Dr. Miller's research, veterinarians
    have testified that the animals do experience pain and suffering,
    despite the decerebration. Anatomists have pointed out that factors
    that might affect or control vestibular-induced vomiting in four-legged
    animals cannot apply to two-legged humans. Clinicians have commented
    that phony, experimentally induced nausea produced by invasive
    procedures in the laboratory have nothing to do with spontaneous and
    naturally occurring nausea and vomiting found in humans. Even if the
    researchers have learned something about vestibular control of vomiting
    or other reflexes, which is doubtful because of the many confounding
    laboratory variables, they have learned absolutely nothing about the
    human condition because of crucial differences between cats and humans.
    There is no evidence that any human beings have benefited, or could
    ever benefit, from Dr. Miller's research.
        It is particularly appalling that, in project number 2 R01 NS
    20585, Dr. Miller implies that his research could prove to be of some
    value in AIDS patients. This typifies the kinds of experiments recently
    criticized in a report commissioned by the NIH's Office of AIDS
    Research that showed that much of the $1.4 billion of federal money
    being spent on AIDS research supports studies only marginally related
    to the disease. This is as marginal as it gets.
        Dr. Miller has introduced a word that he uses to describe vomiting
    that isn't vomiting; this is fictive vomiting. Since fictive is defined
    as not genuine, or imaginary, it can be accurately concluded that his
    results are similarly not genuine. These kinds of non-genuine research
    projects should be terminated in our real world of limited funds and
    serious diseases that must be treated.
    Vestibluar Reflexes in the Cat
        Dr. Miller's second project, the vestibular control of respiration,
    is a direct extension of the research of Victor J. Wilson at
    Rockefeller University. Wilson, who retired from active research in
    1996, received a single grant spanning 36 years to study the control of
    vestibular reflexes in the cat. The cost for that project was over $4.4
    million and produced no information of importance to the treatment of
    human disease. A similar request for any clinical citations for
    Wilson's research was posed to Rockefeller University, again with no
    response.
        Victor J. Wilson can be credited with spawning a network of
    researchers to follow in his footsteps. These researchers have become
    masters at creating a myriad of variables so they can keep the
    vestibular project alive. Year after year, they come up with new
    parameters for their studies including a wide variety of locations for
    injections and lesions, different places to do recordings or to place
    electrodes or a new way to manipulate the inputs/outputs, or in
    developing different ways to measure or produce damaged sensory
    capacities, or in the use of different reagents, recording devices, lab
    equipment and so forth. Their area of expertise has become designing
    experiments that produce large amounts of data. The fact that this data
    has no relevance does not seem matter to the researchers, or to the
    NIH, which continues to fund them.
        The work of these investigators displays a long-standing problem in
    the funding of research with public money--the continued funding of
    multimillion dollar projects, year after year, which have no purpose
    other than, at best, to satisfy curiosity in order to subsidize
    scientists without providing anything of value to the taxpayers who
    support the work.
       nih's office of protection from research risks division of animal
                                    welfare
        With numerous staff members, including at least two veterinarians,
    the operations of the Office of Protection from Research Risks (OPRR)
    Division of Animal Welfare cost taxpayers significant amounts of money
    annually. It is the experienced opinion of In Defense of Animals that
    this office has failed woefully and consistently to uphold its mandate
    under the 1985 Health Research Extension Act. That Act (Public Law 99-
    158, November 20, 1985) established OPRR's Division of Animal Welfare
    to ensure that all research institutions in receipt of NIH grants are
    in full compliance with Public Health Service Policy (PHS) Regarding
    the Humane Care and Use of Laboratory Animals. IDA can supply
    voluminous documentary evidence showing OPRR's willful ignoring of
    continued non-compliance with PHS policy on the part of NIH-funded
    research institutions. Since the Health Research Extension Act compels
    OPRR to act upon such non-compliance, the office's willful failure to
    uphold the law merits serious review.
        It is IDA's considered opinion that taxpayer money spent on this
    office is completely wasted and that the enforcement functions outlined
    in the 1985 Act should be transferred to an office that can demonstrate
    an ability and willingness to uphold and enforce this Act of Congress.
                                   conclusion
        In this time of hard choices to balance the budget, an increasing
    outcry against corporate welfare, and a scarcity of research funding
    for responsible, much-needed studies with direct applicability to human
    health, U.S. taxpayers must not be forced to permanently underwrite--
    year after fiscal year--the researchers or research facilities with
    poor track records, including repeated violations of federal law. The
    continued federal support for The Coulston Foundation and for the
    experiments of Ron Wood and Alan Miller is an indication that something
    is seriously wrong with the way NIH allocates funding appropriated to
    it by Congress.
                                     ______

              Prepared Statement of the United Ostomy Association
        Thank you for the opportunity to submit written testimony to the
    Chairman and Members of the Appropriations Subcommittee on Labor,
    Health and Human Services, Education, and Related Agencies. The United
    Ostomy Association appreciates the Committee's past support for
    digestive disease research an colon cancer prevention and education
    programs, particularly those programs provided for through the Centers
    for Disease Control and Prevention (CDC).
        The United Ostomy Association is a volunteer-based health
    organization dedicated to assisting people who have had or will have
    intestinal or urinary diversions. Our national organization and 550
    chapters provide educational services and psychological support to
    these individuals and to their families. We also advocate and promote
    increased awareness about the many digestive diseases that can led to
    ostomy surgery. The United Ostomy Association currently has chapters
    throughout the United States and Canada and has more than 35,000
    members.
        More than one million people in the United States currently have an
    ostomy, and 70,000 to 80,000 people have either temporary or permanent
    ostomy surgery each year. Colorectal cancer accounts for approximately
    60 percent of ostomy surgeries.
                   centers for disease control and prevention
        Colorectal cancer is the third most commonly diagnosed cancer for
    both men and women in the United States and the second leading cause of
    cancer related deaths. Although survival rates are greatly enhanced
    when colorectal cancer is detected and treated at an early stage,
    recent studies have shown a tremendous need to encourage the public to
    seek screening and to educate health care providers about colorectal
    screening guidelines. The United Ostomy Association is supportive of
    the CDC's colon cancer outreach initiative and encourages its work with
    national partners in developing an information program emphasizing the
    value of early detection.
        The CDC has begun collaborative work with the United Ostomy
    Association in response to report language supported by the Committee
    last year. In the past, the Association has been concerned that a lack
    of information about persons who have had ostomy surgery hampers the
    coordination of cancer research and limits the effectiveness of
    prevention outreach and education efforts. Learning more about those
    patients who have been at risk would be helpful in carrying out colon
    cancer prevention efforts. This information also would help to better
    direct federal efforts to reduce the incidence of colon cancer and to
    provide needed information to patients and physicians about the
    prevention of ostomy-related complications.
        The United Ostomy Association looks forward to continuing to work
    with CDC, as part of its colon cancer initiative, regarding the need
    for better information about colon cancer risk factors and effective
    prevention techniques and outreach.
        Recommendation.--The United Ostomy Association encourages the
    Committee to provide $5 million in fiscal year 1998 funding for CDC's
    colon cancer prevention and outreach campaign.
                         national institutes of health
    National Institute of Diabetes and Digestive and Kidney Disease
        The United Ostomy Association also is encouraged by the research
    being conducted through the National Institute of Diabetes and
    Digestive and Kidney Disease (NIDDK). Millions of Americans around the
    country who suffer from a variety of digestive disorders pin their
    hopes for a better life--or even life itself--on medical advances made
    through the basic and genetically-based research conducted at NIDDK.
        While digestive diseases are poorly understood, recent scientific
    evidence has shown that interactions between the immune system,
    inherited susceptibility, and the environment are involved. New
    advances in molecular biology now permit the most advanced research
    into digestive disease to provide a better understanding of digestive
    disease and possible future treatments and cures.
        The United Ostomy Association supports the Institute's continued
    research in the areas of inflammatory bowel disease, dietary prevention
    of diverticulitis recurrence, urological disease, and birth defects
    that led to digestive complications. We also emphasize the need for
    NIDDK to pursue a balanced allocation of its research funds to
    digestive disease needs. Development of a coordination committee within
    the National Institutes of Health, similar to the one currently in
    place for sleep disorders, would be helpful in setting priorities for
    digestive disease research and maximizing the utilization of the
    resources available in this area.
        Recommendation.--The United Ostomy Association recommends that the
    Committee provide NIDDK with a nine percent increase in funding for
    fiscal year 1998, bringing NIDDK's total appropriation to $889 million.
        The United Ostomy Association appreciates the opportunity to submit
    this written testimony to the Committee on fiscal year 1998
    appropriations for digestive disease research and education.
                                     ______

       Prepared Statement of the American Academy of Physician Assistants
        On behalf of the American Academy of Physician Assistants and the
    nearly 26,000 PAs in clinical practice, we appreciate this opportunity
    to present our views on the fiscal year 1998 appropriations for
    Physician Assistant education programs, which are funded through Title
    VII of the Public Health Service Act.
        PA programs provide students with a primary care education that
    prepares them to practice medicine with physician supervision. The
    first PA program was started at Duke University approximately 30 years
    ago, and today there are 96 accredited programs in the United States.
    The typical PA program is 25 months long, requires at least two years
    of college and some health care experience prior to admission. The
    majority of students have a baccalaureate degree and 48 months of
    health care experience before admission to a PA program. PAs are
    certified by the National Commission on Certification of Physician
    Assistants. They are re-registered every 2 years based on 100 hours of
    continuing medical education, and re-certified every six years by
    examination. Approximately 88 percent of PAs hold at least a bachelor's
    degree, while 18 percent hold either a masters or doctorate. The latest
    AAPA census data indicate that family/general practice remains the most
    common area of PA practice.
        As members of this committee know, federal funding for PA education
    programs serves many needs. Fundamentally, Title VII helps to ensure
    that areas of our country most in need of health care services,
    specifically rural and urban medically underserved areas, have access
    to quality, affordable and cost-effective care. This is accomplished by
    funding PA education programs that have a demonstrated track record of:
    1) placing PA students in medically underserved communities; 2)
    exposing PA students to medically underserved communities during the
    clinical rotation portion of their training; 3) and recruiting and
    retaining students from minority and disadvantaged backgrounds.
        To ensure that Title VII programs meet the needs of the nation's
    medically underserved, Congress adopted significant changes to the
    health professions statute with the Health Professions Education
    Extension Amendments of 1992. These amendments established new areas of
    emphasis, including minority representation, rural areas, and HIV/AIDS,
    while maintaining a strong focus on primary care. The restructuring was
    designed in large part to increase the number of graduates practicing
    in underserved areas and was incorporated by establishing funding
    preferences as part of the grant review and award process.
        We believe PA programs have responded extremely well to the intent
    of the 1992 amendments, and the AAPA is pleased to share with this
    committee the following examples of how PA programs are using Title VII
    funding to meet these very critical objectives:
      --A Texas PA program established the objective of having its PA
            students do their family medicine rotation in medically
            underserved sites. Through assistance from Title VII funding,
            the PA program has established enough clinical training sites
            to require each student to complete a family medicine rotation
            in a rural medically underserved area. As a result, over the
            past three years, 75 percent of the program's graduates have
            entered family medicine, and approximately 30 percent of the PA
            graduates took positions in medically underserved areas.
      --A Washington state PA program recently placed two PA graduates in
            the Yakima Valley Farmworkers Clinic. One PA was previously a
            medical assistant from a migrant family, but having completed
            her PA education, she now serves as a PA in the clinic. The
            other PA student was previously a respiratory therapist in
            Walla Walla. Upon completing his PA education, he has committed
            to primary care practice and is now also working in the
            Farmworkers Clinic.
      --Several PA programs, including the University of California--Davis,
            the University of Texas--Galveston, and the University of
            Washington, have utilized Title VII funding to train ``place
            bound'' students. These PA students receive training in their
            home communities, and then practice there upon graduation.
            These programs specifically targeted Hispanic and rural
            disadvantaged students.
        Without Title VII funding, many of these special PA training
    initiatives would not be possible. Institutional operating budgets and
    student tuition fees simply do not provide sufficient funding to meet
    the special, unmet needs of medically underserved areas or minority
    students. Nevertheless, the need is very real, and Title VII is
    critical to meeting it.
        As members of this committee know, a growing number of Americans
    lack access to primary care, either because they are uninsured or
    underinsured or there are not enough providers to see them. We
    anticipate an increase in the demand on all public health programs as a
    result of the welfare legislation enacted in the 104th Congress, by
    those patients who will be disenrolled from the Medicaid program.
    Simultaneously, the number of medically underserved communities
    continues to rise, from 1,949 in 1986 to 2,492 today. Despite these
    unfortunate realities, funding has not increased for the Title VII
    programs that are designed to alleviate these very problems. Between
    fiscal year 1994 and fiscal year 1997, PA program funding went from
    $6.5 million down to $5.9 million and, as of fiscal year 1997, was
    restored to $6.4 million. And while we appreciate the budget
    constraints that federal appropriators face, without at least modest
    increases in funding, it is nearly impossible for PA programs to
    generate the needed supply of PAs who can help to preserve access to
    our nation's most vulnerable populations.
        To address some of the concerns that exist in today's health care
    delivery system, the states have begun to take aggressive steps to
    increase access to health care, the most comprehensive of which is
    their pursuit of Section 1115 and 1915 waivers from the Health Care
    Financing Administration. These waivers are an attempt to expand health
    care access through savings realized from managed care, as well as to
    guarantee a ``medical home'' to Medicaid and AFDC recipients.
        As the states proceed with their waiver efforts and the impact of
    the new welfare law is felt, more primary care providers will be
    needed. But the states have never shouldered the responsibility for
    educating and training providers. Since the establishment of Medicare,
    the costs of physician residencies, nurses and some allied health
    professions training has been paid through Graduate Medical Education
    funding. However, GME is not and never has been available to PAs. More
    importantly, GME was not intended to nor does it generate a supply of
    providers willing to work in the nation's medically underserved
    communities. That is the purpose of Title VII, which makes the work of
    this committee all the more important.
        Ensuring an adequate supply of health care providers, particularly
    in rural and urban medically underserved areas, is an issue in which
    Congress has long played an important role. There are several reasons
    why this should continue. Congress has long recognized that it has a
    role in addressing the geographic maldistribution of health care
    providers, as well as the under-representation of minority and
    disadvantaged students in the health professions.
        As this committee knows, the PA profession has a long standing
    commitment to practice in our nation's small towns, rural areas, and
    medically underserved communities. More than 40 percent of PAs practice
    in communities of less than 100,000, and nearly 15 percent practice in
    areas with a population of less than 10,000. Further, according to 1993
    Health Personnel in the United States, Ninth Report to Congress, PAs
    ``are more likely than are physicians to practice in rural and
    medically underserved areas.''
        We sincerely appreciate that this committee has long supported the
    creation and expansion of PA programs as a way to make a substantial
    contribution to meeting our nations primary care needs in underserved
    areas. However, if PAs are to meet these needs, Congress must consider
    increasing Title VII funding to PA programs. Clearly, federal support
    of PA training is highly cost effective. In fiscal year 1995, 35 PA
    programs received federal funds over a 3-year grant period, with an
    average grant of $135,000 per year. With an average first and second
    year class size of approximately 70 students, the per pupil support
    equals $1,928. By any standard that is a sound investment.
        We also believe Congress' support has been used very effectively by
    the PA profession, particularly when compared with other professions.
    For instance, a report compiled by the School of Nursing at the
    University of Pennsylvania for the Department of Health and Human
    Services, points out that ``a greater number of [advanced practice
    nurses] have been trained than are presently practicing.'' Of 49,500
    registered nurses who had received formal training as nurse
    practitioners (NPs) as of 1992, ``an estimated 23,659 practiced with
    the title of nurse practitioner'' or approximately 48 percent. At that
    same time, 23,000 PAs were in clinical practice out of 27,000
    graduates, or approximately 85 percent. Today, approximately 93 percent
    of AAPA's members are in either full or part-time clinical practice.
        According to the same report, in 1991, $14 million in Title VIII
    funds were awarded to 52 nurse practitioner programs, compared to $5
    million awarded to 40 PA programs. However, as noted above, less than
    half of trained NPs are in clinical practice, compared to 93 percent of
    AAPA's members. With increasingly scarce resources, we believe Congress
    must invest in those providers most likely to meet the objectives of
    Title VII, namely, to educate and train PAs who practice and deliver
    critically needed primary care services.
        Title VII is all the more important because the demand for PAs
    today is quite strong, with the Department of Labor projecting that the
    number of PA positions is expected to increase by 36 percent between
    1992 and 2005. Further, AAPA's latest census data shows that salaries
    for PAs continue to rise, reflecting strong market demand. With such
    demand, it is even more critical for Title VII funding to be increased.
    Without PA programs that have and dedicate resources to placing PA
    students in medically underserved sites during their clinical training,
    PA graduates are far more likely to practice either where they grew up
    or near where they went to school. Title VII is the critical link to
    addressing the natural geographic maldistribution of health care
    providers, by exposing students to underserved sites during their
    training, where they frequently choose to practice upon graduation.
        We sincerely appreciate the 12 percent increase in PA program
    funding that was passed by the House Appropriations Committee and
    Congress during the 104th Congress. However, that increase only
    restored PA programs to their fiscal year 1995 levels, and in and of
    itself will not be sufficient to meet the increasing demand for PA
    graduates in the growing number of medically underserved sites.
    Therefore, we respectfully request that PA programs be funded at their
    current authorized level of $9 million.
        We also urge members of Congress and this Committee in particular
    to remember the inter-dependency that all of the Public Health agencies
    and programs have on one another. For instance, while it is important
    to fund clinical research at the National Institutes of Health and have
    an infrastructure at the Centers for Disease Control that ensures a
    prompt response to an infectious disease outbreak, the good work of
    both of those agencies will go unrealized if the Health Resources and
    Services Administration is inadequately funded. HRSA administers the
    ``people'' programs, such as Title VII, that bring the cutting edge
    research discovered at NIH to the patients--through providers such as
    PAs who have been trained in Title VII-funded programs. Furthermore,
    the CDC is heavily dependent upon an adequate supply of health care
    providers to be sure that disease outbreaks are in fact reported,
    tracked, and contained. In this sense, NIH, CDC and HRSA are the
    proverbial three-legged stool, no one of which can remain standing
    without the other.
        In conclusion, the Academy respectfully requests that the
    Appropriations Committee carefully examine the reform activity
    occurring in the states, the impact of changes to welfare and Medicaid
    recipients, the inevitable need for more primary care providers,
    particularly PAs, that will logically follow, and the need to support
    the entire public health infrastucture. We hope you will agree that not
    just continued but ideally expanded federal support of PA education is
    of fundamental importance to the nation as a whole as we strive to
    provide primary care to those citizens who now go without. Thank you
    for the opportunity to present the Academy's views on fiscal year 1998
    appropriations.
                                     ______

     Prepared Statement of Terry-Jo Myers, Interstitial Cystits Association
        Honorable Chairman and Members of the Committee: Thank you for
    giving me the opportunity to submit my written testimony. I would like
    to tell you about interstitial cystitis and to ask your help in
    continuing to fund research to find a cure for this painful,
    debilitating disease. My name is Terry-Jo Myers. I am a professional
    golfer completing my 12th year on the LPGA tour. I also have
    interstitial cystitis. While I appear as a seemingly healthy person to
    anyone who meets me, that is because the effects of interstitial
    cystitis are not visible to others. But I can assure you that my work,
    my family and social life, and my pursuit of many dreams have all been
    dramatically affected by the experience of IC. I hope to give a voice
    to all those IC patients who are too ill to leave their homes.
        Interstitial cystitis is a chronic inflammatory bladder condition.
    Its cause is unknown and, at present, there is no uniformly reliable
    treatment. The symptoms, which can be severe and unrelenting, include
    urgency and frequency of urination--up to 60 or more times in 24 hours;
    and pain in the bladder which IC patients have described as burning,
    like ``electric shocks,'' or being so severe that it feels like ``razor
    blades in the bladder.''
        I was diagnosed with IC shortly after I developed symptoms at the
    age of 21, but I was told that nothing could be done: I would just have
    to live with the pain--a prescription that far too many IC patients
    still receive. Every step I took was painful, and for a tour player, it
    was torture. Often I could not even bend down to line up a putt. I had
    to urinate about 50 times a day, including 10 to 20 times at night. I
    played in non-stop pain and had constant anxiety about being able to
    make it to the next bathroom.
        Travel is especially difficult for many people with IC. Players on
    the LPGA tour travel about 28 weeks a year, and it was a nightmare for
    me. I arrived at tournaments exhausted. While my fellow players were
    practicing, I was often forced to remain in the locker room.
        Saddest of all for me personally, IC affected my golf game. As a
    junior athlete, I won many tournaments, but as a professional with IC,
    my performance was terribly hindered by the disease. Because LPGA rules
    prohibit players from leaving the course for any reason, I have had to
    withdraw from tournaments in the middle of the round because I needed
    to go to the bathroom. In 1988, I won the Mayflower Classic, but I
    attribute much of that win to the fact that there were two rain delays
    that allowed me to go to the bathroom and keep playing.
        For the last two years, I have been able to complete a full
    schedule in relative comfort, and look forward to continuing to do so.
    Last year, when I was 33, I said publicly that I felt confident that I
    had a good ten years left in my career, and in many ways I felt as
    though it would be my first ten years. I am very happy to report that
    on February 16th of this year, I won the Los Angeles Women's
    Championship in Glendale, California, and I believe that I will win
    again. I attribute much of this victory to the oral drug Elmiron, which
    was recently approved for distribution by the FDA, but which only
    provides relief in less than half of the IC sufferers who use it.
        So while I am enjoying better health and reclaimed success, there
    are many many others who have not been as fortunate. I have had IC for
    13 years, but it is only five years since I was able to find a doctor
    to help me. This doctor put me in touch with the ICA and motivated me
    to take steps to help me cope with my illness. This doctor was aware of
    Elmiron and assisted in helping me to obtain it through the FDA's
    Compassionate Use Program. Not all IC patients have been as lucky. Many
    can't travel, work, or meet their family obligations. Many become
    financially destitute as they lose their health insurance coverage and
    try to keep up with their IC treatments. Some have their bladders
    removed, only to encounter a whole new array of medical problems. The
    pain of IC can be unbearable and we have many suicides each year
    because of it.
        Because it is a comparatively rare disease that affects mostly
    women, and historically, urology and urological research have focused
    primarily on male urological problems, interstitial cystitis is a
    disease that continues to be ignored by many members of the medical
    community. But it is a serious and costly condition. An epidemiological
    study sponsored by the Urban Institute found that an estimated 450,000
    people in the U.S.--men and women both--may suffer from IC, with an
    economic impact as high as $1.7 billion per annum.
        Fortunately, there is hope, thanks to previous Congressional
    funding, the NIDDK has built the IC Database, an extensive pool of IC
    patient information collected at nine sites around the U.S., and stored
    and analyzed at the Pennsylvania State University, Hershey Medical
    Center. Database staff have taken detailed patient and family medical
    histories and asked questions about diet, symptoms and experiences with
    diagnosis and treatment. Medical tests have also been performed on
    patients whose symptoms warrant them.
        Researchers have already begun to publish reports analyzing data
    obtained from this study, with the expectation that the Database will
    provide clues as to how IC develops, how to diagnose and categorize
    patients, and how to treat the disease more effectively. In short, the
    Database is providing the first systematic long-term look at a large
    number of IC sufferers.
        The Interstitial Cystitis Association and all IC patients are so
    grateful to all Members of this Subcommittee, and in particular, to
    Chairman Specter and Senator Reid for their ongoing support of research
    on IC and other urological diseases. Without your help, we would be
    nowhere in our struggle. Because of your commitment, we are beginning
    to see some progress. In conclusion, I respectfully ask that the
    momentum continue in the IC research initiative started by this
    Subcommittee and:
      --That at least $2.5 million in additional funds be provided to the
            Urology Program of the NIDDK in fiscal year 1998 specifically
            to support further IC research;
      --That $2 million of these funds be used to support further research
            into IC, solicited through An RFA focusing on clinical studies
            which would address the areas of IC diagnosis, prevention,
            treatment and epidemiology; and
      --That the remaining $.5 million be added to the current funding of
            the IC Database to support multi-centered clinical trials
            utilizing patient characteristics and sub-groups that have been
            identified in the IC Database.
        Our need is great. But we are confident that with your help and
    with adequate, continued funding for IC research through the NIDDK,
    results will be no less than miraculous. As a victim of IC, I know what
    it is like to endure chronic, unrelenting pain. Please help us to end
    our suffering. Help us find a cure for interstitial cystitis. Thank
    you.
                                     *ERR49*
                                     ______

                                 Public Health
              Prepared Statement of the Family Planning Coalition
        The Family Planning Coalition, a group of health care providers and
    organizations dedicated to improving access to voluntary, comprehensive
    family planning services, is pleased to submit testimony in support of
    the Title X (ten) Family Planning Program. For more than 25 years, the
    Title X program has provided comprehensive, voluntary family planning
    services to millions of poor and low-income women. The program provides
    federal funds to public and private nonprofit organizations for the
    provision of family planning and other basic health care services which
    improve maternal and infant health, lower the incidence of unintended
    pregnancy, reduce the incidence of abortion, and lower rates of
    sexually transmitted diseases (STDs).
        Title X clinics are community based providers located in every
    state and in three-fourths of all counties in the United States. Each
    year, they are able to provide primary preventive health services to
    more than four million Americans at over 4,200 Title X-funded sites
    across the country. These clinics often serve as the entry point to the
    health care system--and the only source of service--for millions of
    American women. The range of services supported by Title X includes
    contraceptive information and the provision of all contraceptive
    services; gynecological examinations; pregnancy testing; basic lab
    tests; screening services for high blood pressure, anemia, breast and
    cervical cancer, HIV, and other STDs; sterilization services; natural
    family planning; and community education and outreach. Since its
    inception, Title X has prohibited the use of federal funds to pay for
    abortions.
        Title X was established in 1970 with broad bipartisan support. The
    original measure was introduced by Representatives James Scheuer (D-NY)
    and George Bush(R-TX) and Senators Joseph Tydings (D-MD) and Charles
    Percy (R-IL). Even today, in an era of tighter budgets and increasing
    political polarization within Congress, the House and Senate, in a
    bipartisan manner, have consistently affirmed the value of the Title X
    family planning program by supporting funding and voting down attempts
    to place additional restrictions on access to services.
        The health and economic benefits to women, children, and families
    of improved access to family planning are well documented. Research
    studies have consistently shown that bearing children less than two
    years apart and unplanned pregnancies that occur very early or very
    late during a woman's reproductive years often has adverse health,
    social, or economic consequences both for mothers and for their
    children. The National Commission to Prevent Infant Mortality estimated
    that infant mortality could be reduced by 10 percent, and the incidence
    of low birthweight babies could be reduced by 12 percent, if all
    pregnancies were planned. In addition, the long-term consequences of
    early and unintended pregnancy are often lower levels of educational
    and job attainment as well as a greater risk for these families of
    living in poverty.
        Increased access to family planning services is critical because
    more than half of all pregnancies in the U.S. and three-quarters of
    teen pregnancies are unintended at the time of conception.
    Approximately half of these unintended pregnancies result in a live
    birth, while the other half end in abortion. It also is important to
    note that the 10 percent of sexually active American women of
    reproductive age who do not use contraception account for 53 percent of
    all unintended pregnancies. While Title X by itself cannot reduce the
    staggering rate of unintended pregnancy to zero, enhancing access to
    family planning services is critical if we are to reach our national
    goal of ensuring that every pregnancy is intended. The contribution of
    Title X toward this goal is evidenced by 1994 data that indicate that
    nearly one million unintended pregnancies were averted among women who
    sought services at Title X funded clinics.
        Family planning is indisputably cost effective. In 1991, the cost
    of an uncomplicated vaginal delivery alone was approximately $4,720.
    For every public dollar spent to provide family planning services, over
    $3 are saved in publicly funded medical costs alone. According to a
    1995 study, by helping low-income women to prevent unintended
    pregnancies, publicly funded family planning programs assist 123,000
    women already on welfare to avoid pregnancy each year, and prevent
    pregnancies to 80,000 women at risk of going on welfare if they had a
    child.
        Teen pregnancy rates have been a particular focus of congressional
    attention. While teenage pregnancy rates have begun to decline for the
    first time in recent memory, the teenage pregnancy rate in the United
    States remains high--over 12 percent of teens, ages 15 to 19, become
    pregnant each year, resulting in over half a million births. In
    addition, the teenage pregnancy rate in the United States is much
    higher than in many other developed countries--twice as high as in
    England, Wales, France, and Canada; and nine times as high as in the
    Netherlands or Japan. Providing teens with access to contraception
    information and supplies, as well as information on abstinence and the
    prevention of STD infection, is one way to allow teens to act
    responsibly and address our nation's high rate of teen pregnancy and
    teen STD infection.
        Title X family planning clinics provide confidential screening and
    treatment for STDs, which affect 12 million Americans annually, one
    quarter of whom are teens. The increasing number of clients testing
    positive for HIV and other STDs also speaks to the importance of
    increases in funding for Title X. Title X clinics are on the front
    lines providing the counseling, screening, and treatment of STDs.
    Between 1980 and 1990, visits to Title X clinics that involved either
    testing or treatment for an STD increased by 30 percent. Women are
    particularly vulnerable to STDs because they are biologically more
    susceptible to certain infections than men. STDs increase the risk of
    HIV infection. Women bear a disproportionate burden of STD-associated
    complications, including infertility, ectopic pregnancy, and chronic
    pelvic pain. Chlamydia, an STD reaching epidemic proportions, causes
    infertility but often has no symptoms. The absence of symptoms commonly
    results in delayed diagnosis and treatment. Cervical cancer related to
    STDs kills over 300,000 women each year.
        Given the high rates of unintended pregnancy among teenage and
    adult women as well as the cost-effectiveness of family planning, the
    need for a funding increase for the Title X program is clear. Title X
    funding declined precipitously during the 1980s and has regained little
    ground since this period. At the same time, health care costs soared,
    the number of eligible patients increased, and the cost of
    contraceptive supplies rose dramatically. The ranks of the uninsured
    and underinsured continue to swell, while the cost of contraceptives
    also continues to rise. For example, between 1991 and 1992, the average
    price that publicly funded clinics paid for oral contraceptives rose 42
    percent.
        The Coalition applauds Congress for approving a modest funding
    increase for the Title X program for fiscal year 1997 to $198.452
    million. The fact remains, however, that clinics continue to be asked
    to do more with less. The overall decline in inflation adjusted funds
    for Title X has forced some family planning clinics to cut back or
    eliminate outreach efforts to underserved communities and patients, cut
    back hours of operation, accept fewer patients who need subsidized
    services, and place patients on waiting lists for long-acting methods
    of contraception, including Depo-Provera, IUDs, and voluntary
    sterilization which have high up front costs, but are cost effective
    over the long term. Had the program's 1980 funding level of $162
    million simply kept up with the rate of inflation as calculated using
    the medical care services index, funding for the program would now be
    $515.16 million.
        Given the proven effectiveness of the Title X Family Planning
    Program, the Coalition respectfully requests a funding level of $250
    million for Title X in the fiscal year 1998 Labor, HHS, and Education
    Appropriations bill. While the Coalition recognizes the budgetary
    constraints which Congress is working under, the cost-effectiveness of
    family planning speaks for itself-investing more in the Title X program
    now will save many more federal dollars down the road. This increase,
    which would leave program funding at less than half of the inflation
    adjusted level for 1980, will allow Title X grantees to serve a larger
    number of clients and make more widely available the most effective
    forms of contraception and improve outreach and screening services,
    thereby further reducing the incidence of unintended pregnancy and
    sexually transmitted diseases.
        Family planning is the common ground on which we can all agree.
    Over the last two years, Congress has repeatedly voted to support
    funding for and access to family planning services for all Americans.
    The Coalition urges the subcommittee to carefully consider the well-
    known benefits associated with family planning and the support of the
    American electorate for these vital services when determining the
    fiscal year 1998 funding level for the Title X program. Family planning
    reduces the need for abortion, provides positive health benefits for
    women, children, and families, and saves American taxpayers money in
    the long run. As such, family planning remains a very wise investment
    in the future of our country and its children.
        This testimony is submitted on behalf of the undersigned members of
    the Family Planning Coalition: Advocates for Youth; American
    Association of University Women; American Civil Liberties Union;
    American Jewish Congress; American Medical Women's Association;
    American Nurses Association; American Psychological Association;
    American Public Health Association; American Society for Reproductive
    Medicine; Association of Maternal and Child Health Programs;
    Association of Reproductive Health Professionals; Association of
    Schools of Public Health; Center for Reproductive Law and Policy;
    National Abortion and Reproductive Rights Action League; National
    Association of City and County Health Officials; National Association
    of Nurse Practitioners in Reproductive Health; National Council of
    Jewish Women; National Family Planning and Reproductive Health
    Association; National Women's Law Center; NOW--Legal Defense And
    Education Fund; People for the American Way Action Fund; Physicians for
    Reproductive Choice and Health; Planned Parenthood Federation of
    America; Sexuality Information and Education Council of the United
    States; The Alan Guttmacher Institute; Union of American Hebrew
    Congregations; Women's Legal Defense Fund; and Zero Population Growth.
                                     ______

     Prepared Statement of Daniel Zingale, Executive Director, AIDS Action
                                    Council
        Mr. Chairman and Members of the Committe. I am Daniel Zingale,
    Executive Director of AIDS Action Council, the Washington voice for
    over 1,400 community-based AIDS service providers from across the
    country and the people living with HIV/AIDS they serve. AIDS Action
    Council is the only national organization dedicated solely to shaping
    federal AIDS policy. This work is supported by our members and
    individual donations. AIDS Action Council does not receive any federal
    funding.
        We are at a pivotal moment in the history of the AIDS epidemic. I
    am sure you are all aware of the many news reports about the recent
    dramatic advances in the care and treatment of HIV disease. The good
    news is that last year, for the first time in the history of the
    epidemic, the number of people dying from AIDS decreased
    significantly--by 13 percent overall. This dramatic drop in AIDS deaths
    is attributable to a combination of factors: the development of
    improved treatments for battling both HIV and the opportunistic
    infections that accompany it, improving standards of care, and
    increased access to care.
        The bad news is that although the overall number of AIDS deaths
    declined last year, the death rate for women with HIV disease actually
    increased by 3 percent, and death rates among people of color declined
    only nominally. The increase in deaths of women and the lower death
    rate reductions among people of color is a poignant reminder that not
    all Americans are reaping the benefits of high quality AIDS care and
    more effective treatments. These disparities highlight stark inequities
    in the availability of state-of-the- art health care for women and
    people of color, care that people with HIV/AIDS need to stay alive.
        ``Access to care'' means much more than the ability to purchase
    drugs. Drugs alone are not the answer. The unfortunate reality is that
    the new combination therapies with protease inhibitor drugs are not
    effective for all infected individuals. We are still learning about the
    potential of these new treatments, and we do not yet have the answers
    we need about why these treatments seem to produce dramatic health
    improvements for some people living with HIV/AIDS and not others, or
    whether the improvements we have seen will be sustained over time.
    Clearly, there is still an urgent need to invest in additional
    research, not only to answer these questions, but to develop even more
    effective treatments, and ultimately, to discover a vaccine and a cure.
        To benefit from new drug therapies, people must have access to
    affordable, comprehensive medical and supportive services provided by
    well-trained and culturally competent health providers. To access
    medical care, people must have a stable home and vital enabling
    services, like child care, transportation, appropriate case management,
    and substance abuse treatment services.
        This epidemic is far from over. While the overall number of people
    dying from AIDS declined significantly last year, the number of people
    living with AIDS did not. Blacks, hispanics and women accounted for
    increasing proportions of new AIDS cases in 1996. In 1996, blacks
    accounted for 41 percent of adults with AIDS, exceeding the proportion
    of people living with AIDS who were white for the first time. Women
    accounted for an all-time high of 20 percent of AIDS cases reported in
    1996.
        And tragically, the number of people newly-infected with HIV is not
    declining. Even now, over a decade into the epidemic, too many
    individuals do not realize they are at risk for HIV infection. Far too
    many people are not learning of their HIV status until they are
    hospitalized with a major AIDS-defining opportunistic infection,
    lamentably too late to realize the full benefits of early intervention
    with state-of-the-art therapies. Greater community-based education
    efforts and easier access to HIV counseling and anonymous testing is
    vital. The benefits of early intervention care services that hold the
    promise of significantly delaying disease progression can only be
    realized through aggressive education efforts that encourage
    individuals who realize they are at high-risk to be tested for HIV, so
    they can immediately be linked with comprehensive and coordinated
    systems of care.
        Early intervention is not ``true'' prevention, of course. It is far
    less expensive--and far more humane--to prevent someone from becoming
    infected in the first place than to care for that person once they are
    infected. HIV infections continue to increase disproportionately among
    women, communities of color, and adolescents. Much of this increase is
    attributable to injection drug use and substance abuse generally, which
    contributes to unsafe sexual behavior among drug users and their sexual
    partners. Clearly, increased funding for community-based HIV prevention
    programs targeted to women, communities of color, adolescents, and drug
    users and their partners is urgently needed. But we cannot forget that
    substance abuse treatment also constitutes a potent HIV prevention
    strategy. Increased funding for substance abuse treatment and the
    removal of barriers that now prevent local communities from
    implementing syringe exchange programs, which have been scientifically
    proven to reduce HIV transmission and save lives, are essential parts
    of an overall HIV prevention strategy.
        There is great promise in many of the recent developments in the
    fight against the AIDS epidemic and notable challenges and
    opportunities. The federal government must fulfill its responsibilities
    to safeguard and enhance the public health by adequately funding HIV
    prevention, research, care, training and substance abuse programs. This
    committee has shown extraordinary leadership in the past by making
    tough choices that have succeeded in providing funding for programs
    that save lives. If we are to continue to make progress in our fight
    against AIDS, we must look to you once again to provide increased
    resources. The national response to the AIDS epidemic must continue to
    reflect a comprehensive approach by providing adequate financial
    support for research, prevention, care, training and substance abuse
    treatment.
    Prevention
        Absent a preventive vaccine, our only hope of halting further HIV
    transmission is through a comprehensive, targeted approach to AIDS
    prevention throughout the nation. Chronically underfunded for years,
    the Centers for Disease Control and Prevention (CDC) spearheads the
    federal government's prevention strategy. We propose a $212 million
    increase over fiscal year 1997 for the Centers for Disease Control &
    Prevention's (CDC) HIV prevention-related programs.
        AIDS continues to be the leading cause of death among American
    women and men between the ages of 25 and 44, cruelly depriving them of
    years of productive life. Every year, 40,000 to 80,000 more Americans
    become infected with the human immunodeficiency virus (HIV), the virus
    that causes AIDS. Tragically, nearly 50 percent of the new infections
    occur in people younger than 25 years of age. And while men who have
    sex with men still account for a majority of cases among youth and men
    of color, rates of new infections are growing fastest among women,
    doubling every 1-2 years.
        As I stated earlier, it is far less expensive--and far more
    humane--to prevent individuals from becoming HIV-positive in the first
    place. People become infected with HIV because they do not realize they
    are at risk or do not really know how to protect themselves from
    infection. As the recent NIH Consensus Conference on HIV Prevention
    made clear, we have prevention strategies that are scientifically
    proven to work. The problem is that as a nation, we have lacked the
    political and moral will to implement these proven community-based HIV
    prevention strategies. Educating people about behaviors that may place
    them at risk and providing them with the tools to protect themselves
    from becoming infected--whether that means explicit information about
    sexual practices, distributing condoms, or providing clean needles--are
    scientifically sound approaches to HIV prevention.
        Prevention interventions are cost-effective. The Center for AIDS
    Prevention Studies at the University of California, San Francisco,
    estimates that adding $500 million to HIV prevention targeted to high-
    risk groups would yield medical care savings totaling $1.25 billion.
    HIV prevention programs have proven to save lives. Declines in
    infection rates among certain groups, most notably adult white gay men,
    is proof that targeted prevention efforts are successful. However, the
    increasing infection rates among people of color, women, and youth
    highlights the work and investment that is still needed.
        We know what works. Now we must make sure local communities have
    the information and the resources they need to implement community-
    based prevention strategies geared to the specific demographics of the
    epidemic locally. Increased funding for the CDC's cooperative
    agreements with states and localities will enable those states and
    localities to implement the community-based prevention plans developed
    by local health departments and community groups through the HIV
    prevention community planning process.
        States and localities must be given greater resources and the
    flexibility to design comprehensive strategies that include prevention
    education, outreach, counseling and anonymous testing, as well as
    continuing local surveillance and partner notification programs that
    are responsive to the local needs, and not be subjected to one-size
    fits all solutions from Washington.
        Increased funding for the CDC will also enable the CDC to increase
    dissemination of scientific research related to risk behavior and
    methods to reduce HIV transmission, and to strengthen CDC's minority
    and youth initiatives, which are critical to the development and
    implementation of effective, culturally-sensitive, age-appropriate
    prevention strategies targeted at those communities most at risk.
    Care
        The Ryan White CARE Act, which provides primary medical care, AIDS
    drugs, viral load testing, case management and other enabling services
    for thousands of individuals living with HIV/AIDS, plays a vital role
    in ensuring access to appropriate care for Americans living with HIV/
    AIDS. We propose $393.9 million in increases over fiscal year 1997 for
    the medical, social services and training programs in the Ryan White
    CARE Act.
        The appearance of new treatments and new hope has led to a dramatic
    increase in demand for primary care and support services for people
    living with HIV and AIDS. People are living longer and correspondingly
    requiring services over a longer time period. The intricate, fragile,
    AIDS care infrastructure that was constructed over the past 15 years to
    ensure basic health care for people with AIDS who had nowhere else to
    turn is struggling to keep pace with new demands.
        While Medicaid provides health care to at least 53 percent of all
    adults and over 90 percent of the children living with AIDS, many low-
    income people living with HIV disease do not become Medicaid-eligible
    until they have an AIDS diagnosis. Ryan White is often the only safety
    net to respond to the urgent need for early intervention medical care,
    prescription drugs and vital enabling services. The erosion in private
    health insurance coverage and proposed limits on future federal
    Medicaid funding will only further strain the ability of Ryan White-
    funded programs to provide comprehensive services.
        Waiting lists and impossible choices between funding life-
    sustaining prescription drugs, primary medical care or home health care
    will become more common as Ryan White providers work to deliver more
    services for more people without adequate resources. Ryan White Title
    IIIB clinics have documented a 41.1 percent increase in the number of
    new patients within the last year alone, and St. Vincent's Hospital in
    New York City saw a 30 percent increase during 1996 in new patients
    seeking early intervention services
        Each of the five titles of the CARE Act plays a critical role in
    making it the health care and social service safety net of last resort
    for Americans living with HIV/AIDS. Increased funding for all of the
    Titles of the Ryan White CARE Act is needed to ensure that the health
    care and support services infrastructure can continue to meet service
    needs and to successfully support the provision of effective
    medications.
        For Title I, which provides emergency formula and competitive
    grants to those metropolitan areas most heavily affected by the HIV/
    AIDS epidemic, we propose a $96.1 million over fiscal year 1997. Title
    I funds are used to deliver outpatient medical care, substance abuse
    and mental health treatment, and other critical support services. Forty
    nine eligible metropolitan areas (EMAs) now receive Title I funds.
        For Title II, which provides formula grants to the state health
    departments in all 50 states, the District of Columbia, and the
    territories, we propose a $220.6 million increase over fiscal year
    1997. This request includes an increase of $130.6 million specifically
    to the AIDS Drugs Assistance Program and $90 million for state formula
    grants. Title II funds are used to provide medical care and support
    services, and are also used to operate HIV care consortia, fund state
    health insurance continuation, home-based care services, and to
    purchase AIDS-related drugs for low-income individuals through the AIDS
    Drug Assistance Program (ADAP). Title II must also shoulder an
    increasing health care burden associated with the fact that no new
    jurisdictions will become eligible for Title I funding. The number of
    new Title I EMAs was effectively capped by the reauthorized Ryan White
    CARE Act. In addition to the health care and social service demands,
    ADAP continues to face substantial challenges to meeting the demand for
    new and potentially lifesaving and life-extending drug therapies. As a
    result, additional funds are required specifically for ADAP so that, at
    least in the short term, it can continue to address this explosive
    growth in demand from uninsured and underinsured people with HIV/AIDS.
        For Title IIIB, which provides competitive grants to existing
    community-based clinics and public health providers serving
    traditionally underserved populations, we propose a $44 million
    increase over fiscal year 1997. Title IIIB funds are used to deliver
    early intervention and ongoing comprehensive HIV/AIDS health care
    services, including HIV counseling and testing, primary care, and
    prescription drugs.
        For Title IV, which provides competitive grants to pediatric,
    adolescent and family HIV care programs, we propose a $25 million
    increase over fiscal year 1997. Title IV funds are used to provide
    coordinated care services and access to clinical research by linking
    care services to clinical research programs.
        For Title V, which provides competitive grants for projects of
    national significance and to educate and train health care providers in
    HIV/AIDS care through the AIDS Dental Reimbursement Program and the
    AIDS Education & Training Centers (AETCs), we propose a $6.7 million
    increase over fiscal year 1997 for the AETCs and $1.5 million increase
    over fiscal year 1997 for the Dental Reimbursement program. As the
    training arm of the CARE Act, the AETCs ensure that health care
    providers have access to the most up to date information and training
    on competent HIV/AIDS care and treatment and the HIV/AIDS Dental
    program helps to provide training in and access to much needed HIV
    dental care.
    Substance Abuse Prevention and Treatment
        Substance abuse is inextricably linked to the HIV epidemic. We
    cannot stem the spread of AIDS or provide care and treatment for those
    substance abusers who are already infected if we do not address the
    need for prevention and treatment for drug dependence and alcoholism.
    Injection drug use is associated with over one-third of all AIDS cases.
    But substance abuse also plays a significant role in sexual
    transmission of HIV since it contributes to impaired judgement and
    increases in high-risk sexual practices. We propose a $140 million
    increase over fiscal year 1997 for the Substance Abuse Prevention and
    Treatment Blockgrant at the Substance Abuse and Mental Health Services
    Administration (SAMHSA).
        The Substance Abuse Prevention and Treatment Block Grant at SAMHSA
    is the primary funding source for public substance abuse prevention and
    treatment services. The goal of the block grant is to ensure that all
    Americans have access to appropriate drug prevention and treatment
    services. Alcohol and drug prevention and treatment services promote
    good health and reduce high risk sexual behavior. Substance abuse
    prevention and treatment prevent HIV disease, cost far less than HIV
    medical care, and drastically reduces the human suffering and cost
    associated with AIDS.
    Research
        While both a cure for HIV disease and a vaccine to prevent new
    infections remain elusive, AIDS research has experienced significant
    achievements. The productive life span of Americans diagnosed with HIV
    has doubled since 1987 and may easily double again with the recent
    advances in basic research coupled with the new drugs. But we must
    remember that the new drugs are not a cure and we are still years from
    the development of an effective vaccine. To continue to make these
    advances, funding for overall research efforts at the National
    Institutes of Health must increase. We support the professional
    judgement recommendation of a $134.5 million increase over fiscal year
    1997 in AIDS-related biomedical and behavioral research.
        In the last year alone, AIDS research led to the discovery of the
    means by which HIV infects cells and to the approval of the protease
    inhibitors and the non-nucleoside reverse transcriptase inhibitors.
    These new drugs, when taken in combination, can lower viral load--the
    amount of HIV in the blood--to undetectable levels in many people for
    extended periods of time, cutting death rates significantly and greatly
    reducing the rates of opportunistic infections.
        NIH AIDS research is also part of our nation's larger commitment to
    biomedical research. As such AIDS research enhances and stimulates
    research in other fields, with broad implications for human diseases
    such as cancer, heart disease, Alzheimer's disease, and others. Twenty
    five percent of NIH AIDS research funds are used for basic science
    research, which has broad implications across scientific disciplines.
        This Subcommittee and the Congress have made a bipartisan
    commitment to maintain a vigorous national commitment to the flagship
    biomedical and behavioral research enterprise at the National
    Institutes of Health. However, the size and breadth of the AIDS
    research portfolio conducted by all 24 NIH Institutes requires a
    coordinated and strategic plan to ensure that federal resources are
    effectively managed to facilitate answers to the scientific questions
    which hold the greatest promise. In order to accomplish this, a
    consolidated budget administered by the Office of AIDS Research must be
    maintained. It is only by continuing to support this funding mechanism
    that the resources devoted to AIDS research will be allocated to the
    most promising areas of medical and scientific exploration. Ultimately,
    biomedical and behavioral research will provide the critical answers
    for treatment and prevention of HIV infection. Without a concentrated,
    planned commitment to an effective research agenda, we will be unable
    to find new ways to prevent HIV infection, develop new treatments, a
    vaccine or a cure.
        Our nation is at a crucial moment in the fight against AIDS. We
    have made incredible progress on several fronts. However, so much more
    remains to be done. AIDS Action Council calls upon the federal
    government, in partnership with communities across the country, to act
    quickly and assertively to ensure that the new hope touches the lives
    of all people affected by HIV/AIDS.

     FISCAL YEAR 1998 APPROPRIATIONS LEVELS FOR FEDERAL AIDS PROGRAMS AS OF
                                FEBRUARY 19, 1997
                            [In millions of dollars]
    ------------------------------------------------------------------------
                                                   Fiscal year
                                                      1998
                                     Fiscal year   President's   Fiscal year
            Federal program              1997        Budget       1998 need
                                     Actuals \1\  Request 2/6/       \2\
                                                       97
    ------------------------------------------------------------------------
    CDC--Prevention................        617.0        643.0         829.0
                                                       (+17.0)      (+212.0)
    HRSA--Ryan White CARE Act Total        996.3      1,036.3       1,390.2
                                                       (+40.0)      (+393.9)
    Title I........................        449.9        454.9         546.0
                                                        (+5.0)       (+96.1)
    Title II--Care Services........        250.0        265.0         340.0
                                                       (+15.0)       (+90.0)
    Title II--ADAP.................        167.0        167.0         297.6
                                                  ............      (+130.6)
    Title IIIb.....................         69.6         84.6         113.6
                                                       (+15.0)       (+44.0)
    Title IV.......................         36.0         40.0          61.0
                                                        (+4.0)       (+25.0)
    Title V--AETCs.................         16.3         17.3          23.0
                                                        (+1.0)        (+6.7)
    Title V--Dental Reimbursement..          7.5          7.5           9.0
                                                  ............        (+1.5)
    NIH--Research..................      1,501.7      1,541.7       1,636.2
                                                       (+40.0)      (+134.5)
    HUD--HOPWA.....................        196.0        204.0         250.0
                                                        (+8.0)       (+54.0)
    SAMHSA--Substance Abuse
     Prevention and Treatment Block
     grant.........................      1,360.1      1,370.0       1,500.0
                                                       (+10.0)      (+140.0)
    ------------------------------------------------------------------------
    \1\ Funding for Labor/HHS programs was provided through H.R. 4278 The
      Omnibus Consolidated Appropriations Bill of 1997. Funding for HOPWA
      was provided through the fisal year 1997 VA/HUD Appropriations Bill
      signed by the President on 9/26/96.
    \2\ Need figures are supported by the NORA Coalition and represent the
      resources needed to respond to growing case loads, unmet needs and
      unfunded research opportunies.

    Note.--Increases or decreases from the fiscal year 1997 numbers are in
      parentheses.

                                     ______

      Prepared Statement of the Association of Maternal and Child Health
                                    Programs
        For over 60 years, programs within the Title V Maternal and Child
    Health Services Block Grant have helped fulfill our nation's strong
    commitment to improving the health of all mothers and children. State
    Maternal and Child Health (MCH) programs, supported by the federal
    Maternal and Child Health Services Block Grant, have demonstrated their
    ability to adapt through decades of change by responding to the
    emergence of new diseases, discovery of new vaccines, and evolving
    health delivery systems while still fulfilling the core mission of
    improving the health of all mothers and children. Congress has remained
    committed to this program because it provides proven, preventive health
    care to a vulnerable population with demonstrated results. These
    results include reducing maternal and infant mortality, improving the
    health of newborns, immunizing and screening children to prevent life-
    threatening diseases, and helping children with disabilities function
    to their full potential.
        Investment in programs serving children and pregnant women are
    cost-effective, preventive in nature, and result in improved health
    outcomes for mothers and children. For every dollar invested in
    prenatal care, three dollars are saved in subsequent health costs for
    the care of a low-birthweight baby. MCH programs also invest in the
    delivery of immunizations to children. Immunizations are widely known
    to be cost-effective, and for every dollar spent on measles, mumps, and
    rubella vaccine $21 is saved.
        Another important MCH program, newborn screening, prevents chronic
    diseases and disability through early detection, diagnosis and
    treatment. Currently, nearly all 4 million newborns receive screening
    in order to avert tragic health consequences from genetic, metabolic,
    hearing and other disorders. In addition to newborn screening, MCH
    programs provide early intervention and coordination of care for
    children with chronic diseases and disabilities. Through these efforts,
    children are able to function more independently and avoid
    institutionalization. Florida estimates saving $21,000 per disabled
    child over a 20 year period. With demonstrated, preventive programs
    such as prenatal care, immunizations, newborn screening, and care for
    children with disabilities, the MCH Block Grant is a sound investment
    for the health of children and pregnant women.
                               populations served
        The Maternal and Child Health Services Block Grant directly serves
    over 17 million women and children. Through grants, contracts, or
    reimbursements to private and public sector providers, state MCH
    programs support the availability and accessibility of community health
    and family support services, especially for the uninsured and
    underinsured families. Most recent data indicate that MCH programs
    supported preventive, primary, and speciality services to:
    Approximately 4.8 million women; Almost 11.3 million infants, children
    and adolescents; and Approximately 900,000 children with special health
    care needs.
        In addition to direct services, the program reaches many more women
    and children indirectly through population-based services. These
    include services such as newborn screening, sudden infant death
    syndrome (SIDS) counseling, lead poisoning prevention, outreach
    activities, and media campaigns that offer basic information to a wide
    segment of the population to encourage healthy behaviors among women
    and children and promote preventive health care.
                                 state programs
        States benefit from the broad nature and flexibility of the
    Maternal and Child Health Services Block Grant. The block grant's
    flexibility allows states to pool MCH dollars with other public and
    private sector funds to develop new, community-based projects. The
    broad responsibility and function of the program allows state MCH
    programs to address the unique health needs of their states'
    population.
    Targeting Resources
        One of the program's greatest advantages is its ability to adapt to
    the needs of a particular state and target resources to at-risk groups
    in particular communities. Through the assessing of needs of the MCH
    population and tracking health status over time, states can respond to
    a variety of health problems, including low immunizations rates in a
    particular county or high blood lead levels in children living in a
    specific neighborhood.
        For example, the Texas MCH program helps reduce birth defects along
    the Rio Grande River, while also expanding access in underserved
    communities in Arkansas, by contracting with pediatricians to staff
    rural health clinics. In Mississippi, children with chronic diseases
    and disabilities receive surgeries at Jackson University Medical Center
    and follow-up treatment at 22 community-based sites. The Florida MCH
    program has had success in improving low-income women's access to
    prenatal care in cities such as Miami, St. Petersburg, and Sarasota.
    The state's infant mortality rate has dropped over the last ten years
    through these and other efforts.
        In New York, Chicago, Philadelphia, San Francisco, Seattle,
    Baltimore, and other cities throughout our country, the emergence of
    new diseases and treatments for health problems affecting women and
    children have required specific responses. The increased spread of HIV
    among women has threatened their health and the health of their babies.
    Effective coordination of MCH programs with Ryan White Titles II and
    Title IV programs has enabled communities to better respond and treat
    women in order to decrease the risk of infection to their newborns. In
    recent months, MCH programs have been involved in assuring counseling
    and testing of pregnant women to reduce perinatal transmission of HIV
    infection.
    Addressing New Health Delivery Systems
        MCH programs must also address a rapidly changing health care
    system to assure that the needs of children and families are
    appropriately addressed. To accomplish this, MCH program expertise
    assists in developing managed care delivery systems that effectively
    assure key preventive maternal and child health needs.
        In cities such as Milwaukee, the MCH program has played a key role
    in bringing together managed care executives, Medicaid officials,
    physicians, and consumers to improve the health of women and children
    enrolled in Medicaid managed care. The group has focused on improving
    the responsiveness of the Medicaid HMO system for the population,
    simplified the Medicaid eligibility procedures, and secured the
    commitment of foundations to involve families in funded projects.
    Through the MCH Block Grant's structure, states can better target the
    health needs of the communities and respond to emerging issues
    affecting women and children.
                                   unmet need
    Uninsured children and pregnant women
        Low-income children and pregnant women are at increased risk of
    losing health coverage through changes in employment-based health
    coverage. According to recent General Accounting Reports (GAO),
    employers are dropping dependent coverage at an alarming rate. GAO
    reported that between 1989 and 1995 the percentage of children under 18
    with health insurance decreased from more than 73 percent to 66
    percent. If private coverage levels had not decreased, about 5 million
    more children would have private insurance today. GAO estimated that in
    1994 over 10 million children lacked health coverage. Trends in
    decreasing employer-based coverage are only expected to get worse as
    more employers find it too costly to pay for dependent coverage.
    Congress should work to enact bipartisan legislation to increase
    coverage for these 10 million children and an estimated 500,000
    pregnant women. State MCH programs have provided access to care for a
    portion of these low-income women and children, and can continue to
    play an integral part of any federal expansion of health coverage to
    children and pregnant women.
        Even when women and children have coverage, they still may lack
    access to care. State MCH programs:
      --ensure the availability of public and private providers in
            underserved areas;
      --support and coordinate services for children who have complex
            medical conditions or disabilities; and
      --use media campaigns and toll-free hotlines to link families with
            Medicaid, other insurance sources, and providers of prenatal
            and well-child care, and additional services necessary to
            improve birth outcomes and prevent childhood diseases.
    Over 135,000 children with chronic conditions and disabilities will
            lose SSI
        Changes in the welfare system will have serious consequences for
    pregnant women and children. Denial of SSI benefits to 135,000 children
    will have a major impact on the health of these children, their
    families, and the safety-net programs and providers that serve them. Up
    to 50,000 of these children are expected to lose Medicaid. The families
    of these children will turn to care provided at hospitals and clinics
    supported by the MCH Block Grant. This new demand on services will put
    a further strain on already-limited MCH funds. Also, it is anticipated
    that other children and pregnant women who lose benefits through
    changes in welfare reform will need services to prevent critical
    problems facing the community including infant mortality and the spread
    of infectious diseases.
                           funding formula/set-asides
        The MCH Block Grant is a permanently authorized discretionary
    federal grant program. It's current authorization level is $705
    million; in fiscal year 1997, $681,000 million was appropriated for the
    program. Of this $681,000 million, $2.8 million was earmarked for the
    traumatic brain injury demonstration projects. The A'ssociation of
    Maternal and Child Health Programs recommends that new initiatives such
    as the traumatic brain injury demonstration projects, be funded
    separately in fiscal year 1998. For appropriations up to $600 million,
    85 percent of the appropriation is allocated to the states, and 15
    percent is set-aside at the federal level for demonstration, research
    and training, and service projects. For appropriations exceeding $600
    million, 1989 amendments created a second set-aside of 12.75 percent to
    fund six types of demonstration projects: home visiting; provider
    participation; integrated service delivery; non-profit hospital MCH
    centers; rural programs; and community projects for children with
    special health care needs. States match 3 dollars for every four
    federal dollars; many states provide additional funds. States must
    limit administrative costs to 10 percent; maintain state MCH funding
    levels at 1989 levels; and spend 30 percent of funds on preventive and
    primary care for children and adolescents, and 30 percent on services
    for children with special health care needs.
        The MCH Block Grant's two federal discretionary programs or set-
    asides: are the Special Projects of Regional and National Significance
    (SPRANS) program and the Community Integrated Service System (CISS)
    program. SPRANS grants are authorized as special projects that must
    respond to national needs and priorities, have regional or national
    significance, and demonstrate some way to improve state systems of care
    for mothers and children. SPRANS funds are reserved at the federal
    level for the purpose of supporting projects in five areas of research,
    training, hemophilia, genetic diseases, and maternal and child health
    improvement projects. SPRANS grants support technical assistance
    training and research policy development centers that work to build
    states' maternal and child health infrastructure and develop tools and
    information to help states improve the health status of pregnant women
    and children. While SPRANS grants focus on regional and national
    priorities, the CISS program targets communities through increasing the
    capacity for service delivery at the local level and fostering
    formation of comprehensive, integrated, community-level service systems
    for mothers and children.
                             funding recommendation
        To maintain cost-effective, preventive public health services
    protecting all our nation's mothers and children, the Association of
    Maternal and Child Health Programs recommends an appropriation of $705
    million for the Maternal and Child Health Services Block Grant for
    fiscal year 1998. While AMCHP recognizes that there are limited federal
    resources, it should be noted that if the block grant's appropriation
    were to have kept pace with constant 1980 dollars, its funding level
    would now be approximately $730 million. With sufficient funding, this
    program can continue to play a vital role in improving the health
    status of all children and pregnant women.
                                     ______

          Prepared Statement of the American Social Health Association
        This testimony is on behalf of the American Social Health
    Association, the only national non-profit organization dedicated solely
    to the elimination of all sexually transmitted diseases (STDs). For
    over eighty years, the American Social Health Association has addressed
    American's on-going epidemic of STDs through programs of education,
    research and public policy.
        ASHA appreciates this opportunity to provide the Subcommittee with
    information about the health crisis caused by the skyrocketing rates of
    STDs in America and about the programs of the Centers for Disease
    Control and Prevention (CDC) and the National Institutes of Health
    (NIH) that combat these diseases. Before I mention our funding
    recommendations, I will take a brief moment to highlight the
    consequences of the STD epidemic in the United States.
        On November 19, 1996, the Institute of Medicine in a ground-
    breaking report entitled, ``The Hidden Epidemic, Confronting Sexually
    Transmitted Diseases (STDs),'' detailed the inadequacy of the current
    treatment and prevention services for STDs in the United States and
    offered solutions to this problem. The report highlights the high rates
    of STDs in the United States.
        Each year, 12 million Americans suffer from a new STD infection--
    this translates into 33,000 infections every day. This is the highest
    infection rate of curable STDs in the industrialized world. A great
    tragedy of the epidemic is the disproportionate impact STDs have on
    women, adolescents and children. Many STDs are asymptomatic in women
    and lead to life-long consequences, including infertility, cervical
    cancer, increased risk of HIV transmission, ectopic pregnancies and
    severe pelvic pain.
        Research by physicians at Johns Hopkins University has shown that
    93 percent of all cervical cancer cases are caused by one STD--human
    papillomavirus (HPV). Annually, five thousand women die from cervical
    cancer and 16,000 new cases of invasive cervical cancer are diagnosed.
    Unfortunately, cervical cancer will remain a problem in the near
    future. As many as 46 percent of all college-age women in America are
    infected with HPV. Currently, the Breast and Cervical Cancer Prevention
    division and the STD division at the Centers for Disease Control are
    collaborating on a study to determine the feasibility of performing HPV
    screening and pap smear screening in STD clinics. Additional funding
    for this project would allow the STD division and the Breast and
    Cervical Cancer division to collaboratively continue this project.
        Two-thirds of all STD infections occur in persons under age 25. The
    IOM report recommends that the CDC design and implement essential STD-
    related services in innovative ways for adolescents and underserved
    populations. One out of every five sexually active teenagers has
    acquired an STD by the age of 21. The CDC's Accelerated Prevention
    Program is developing new strategies to reach out to this population at
    risk. The disturbing trend in this population places young women at an
    increased risk of developing life-threatening and expensive medical
    complications.
        One of the most devastating lifelong consequences of STD infection
    is the increased risk for HIV infection. The IOM report points out that
    both ulcerative STDs (e.g. syphilis) and inflammatory STDs (e.g.
    chlamydia and gonorrhea) increase the risk of HIV infection. Studies
    have shown that a woman who has gonorrhea is nine times more likely to
    become infected with HIV. Other studies have estimated that
    successfully treating or preventing 100 cases of syphilis, among high-
    risk groups for STDs would prevent 1,200 HIV infections that would
    otherwise result from those 100 syphilis infections during a 10-year
    period. It is no surprise then, given the high rates of STDs among
    young women, that this population is acquiring HIV at a higher rate
    than any other demographic group. In the absence of a vaccine or a cure
    for HIV/AIDS, STD prevention is one of the best strategies to control
    the spread of AIDS. To reduce the incidence of AIDS among the youth of
    the United States, Congress would be wise to invest in the CDC's STD
    prevention program.
        In addition to the emotional and physical toll exacted by STDs, the
    health care expenditures are also staggering. The IOM report estimates
    that approximately $10 billion was spent in 1994 to treat STDs and
    their consequences. When one compares the total costs of STDs with the
    total investment, the results are staggering. The STD-related health
    care costs were approximately 43 times the national public investment
    in STD prevention and 94 times the investment in STD related research.
    Much of the economic toll of STDs could be avoided, as the long term
    consequences result from the failure to detect and treat STDs in their
    early stages. For example, nearly three-fourths of the $1.5 billion
    cost associated with untreated and preventable complications related to
    chlamydial infections could be saved with effective screening and
    treatment programs.
        Fortunately, effective programs to combat the STD epidemic do
    exist. The CDC's Infertility program focuses on screening and treating
    chlamydia and gonorrhea, the STDs that cause infertility. This program
    is very successful and has been found to be cost effective in those
    regions of the country that are screening approximately 40 percent of
    the women at risk. Infection rates have dropped by as much as 61
    percent, screening costs have dropped by 50 percent, and treatment
    costs have decreased by 80 percent due to bulk purchasing and
    centralization of testing. In California, estimates have shown a
    savings of more than $60 million during the first five years of the
    implementation of this program. A recent study conducted at the Group
    Health Cooperative of Puget Sound in Washington state found that
    screening for chlamydia reduced incidence rate by 56 percent.
    Unfortunately, fiscal pressure has constrained the CDC from
    implementing this program across the country.
        Every year, the American Social Health Association joins the
    Coalition to Fight Sexually Transmitted Diseases in recommending
    funding levels for the STD prevention, treatment, and research programs
    of the Federal government. For fiscal year 1998, the Coalition
    recommends a $28 million budget for the CDC Infertility Prevention
    Program, a $15 million increase. With the proven track record of this
    program, ASHA suggests that this $15 million may be the best investment
    the Congress can make to improve the health of our nation's young women
    and reduce health care costs.
        In addition to the Infertility Prevention Program, funding for the
    CDC's STD programs supports the efforts of state and local health
    departments and community-based organizations to implement prevention
    strategies that are responsive to this continually changing epidemic.
    CDC's grants to states support essential programs including partner
    notification programs, clinician training, epidemiological surveillance
    and targeted prevention programs. For these grant programs, the
    Coalition recommends fiscal year 1998 funding of $145 million, a $19
    million increase. This increase will allow the CDC to begin to address
    this exploding epidemic and improve the lives of thousands of
    Americans.
        STD research conducted by the NIH provides our public health system
    with the tools to treat and control the STD epidemic. Advances are
    being made. For instance, research is being conducted on topical
    microbicides, which will provide a simple and effective method of
    stopping STDs at the point of transmission. The NIAID hopes to begin
    extensive research on pelvic inflammatory disease, an infection that
    leads to infertility, ectopic pregnancies and chronic pelvic pain in
    thousands of young women. The Coalition recommends fiscal year 1998
    funding of $83.7 million for the STD branch of the NIAID, an increase
    of $15 million. Funding at this level will allow increased research
    into the role of STD treatment in HIV prevention, and the testing of
    topical microbicides.
        As recommended by the Institute of Medicine, Congress needs to
    confront the ``hidden epidemic'' of STDs. Greater investment in federal
    STD prevention and research programs will yield enormous dividends in
    ameliorating cervical cancer, infertility, and the risk of HIV
    transmission.
                                     ______

      Prepared Statement of the National Association of Community Health
                                    Centers
        The National Association of Community Health Centers (NACHC) is
    pleased to have this opportunity to comment on the fiscal year 1998
    funding for the Consolidated Health Centers program, and related HRSA
    programs. The members of NACHC thank the Chairman and the members of
    the Subcommittee for recognizing the importance of health centers and
    for providing an increase for these program in fiscal year 1997.
        NACHC is a membership organization which represents over 940
    community, migrant, homeless and public housing centers and FQHC look-
    alikes in nearly 2,700 communities across America. Together, these
    health centers care for over 10 million children and adults in every
    state, Commonwealth and Territory, and the District of Columbia. Health
    Centers are local non-profit, community-owned health care programs
    serving low income and medically underserved urban and rural
    communities with few or no resources. Health centers are governed by
    members of the community who have an interest and responsibility to
    ensure that responsive and affordable health care is provided to all
    who need it. They are staffed with interdisciplinary teams of more than
    5,000 physicians (98 percent board certified), as well as nurses,
    dentists, other health professionals and community residents. Health
    centers offer a wide range of primary and preventive medical and dental
    care, including: diagnostic laboratory and radiologic services,
    pharmaceutical services and preventive services such as immunizations,
    well child examinations, preventive dental care, family planning,
    prenatal and postpartum care. Health centers also provide health
    education, community outreach, transportation, and support programs
    (including literacy and other education programs) in collaboration with
    other organizations and agencies like schools, Head Start programs, and
    homeless shelters.
        Without health centers, residents of inner-city and rural
    underserved areas would face great unmet health care needs. Health
    center patients include uninsured low-income persons, minorities, rural
    residents, high-risk pregnant women and children, migrant farm workers,
    persons with AIDS, persons with drug and alcohol problems, homeless
    persons and families, the frail elderly and other high-risk groups. The
    level of need has escalated due to the increasing number of uninsured
    individuals, the new welfare law, and the emergence of health
    conditions and public health threats that were either unknown or
    thought to have been been eliminated a generation ago. Additionally,
    many health center patients also face severe environmental and
    occupational risks.
        The following reflect the profiles of health center patients:
      --Health Centers serve 1 of every 6 low income American children (4.5
            million children).
      --In 1995, the 400,000 births to Health Center patients accounted for
            1 of every 10 births (and 1 of every 5 low income births ) in
            the United States.
      --1 in every 10 uninsured persons (and 1 in every 7 uninsured
            children) in the United states uses Health Centers.
      --Health Centers are the family doctor for 1 in 10 rural Americans.
      --1 of every 8 low income Americans uses Health Centers.
      --Almost 7 million minority persons are Health Center patients.
      --Health Centers are the provider of choice for 1 of every 10 people
            covered by Medicaid.
        There are over 41 million uninsured Americans who suffer financial,
    geographic or cultural barriers to health care. This number of
    uninsured Americans is growing rapidly. Studies have shown that this
    number could reach 50 million or more over the next five years. Nearly
    three-fifths of the uninsured are members of low income working
    families who cannot afford to buy health insurance, are not registered
    in managed care systems, and therefore have no place to go for health
    care but to costly hospital emergency rooms or to health centers.
        Many studies have concluded that health centers, in the process of
    providing primary care to medically uninsured and underserved
    communities, actually achieve cost savings through fewer hospital
    admissions and specialty care referrals, and less frequent use of
    costly emergency care for routine services. A 1996 study shows that
    Health Centers face rising numbers of pregnant teens, homeless
    individuals, and persons with HIV and AIDS, as well as growing numbers
    of farm workers and unemployed individuals seeking their care. Health
    Centers have special expertise in meeting the unique needs of these
    most vulnerable populations and are often the only source of non-
    hospital, community-based primary care for them.
        Few government programs have made as significant a contribution to
    low-income families as cost-effectively, or in as high quality a manner
    as health centers.
      --Health Centers provide a vital community service: Every federal
            health Center grant allows communities to serve an average of
            10,000 people, keeping children healthy and in school and
            helping adults remain productive on the job.
      --Health Centers make a difference in the health of people: Studies
            of Health Centers credit them for a 40 percent reduction in
            infant mortality, improved immunization and prenatal care
            rates, and increased use of preventive health services among
            their patients.
      --Health Centers create jobs and provide an economic base: Health
            centers employ more than 50,000 persons, many of whom are
            community residents. They also help to retain other local
            businesses and stabilize neighborhoods by bringing in other
            forms of community or economic development.
      --Health Centers triple the value of investment: Every $100 million
            invested in Community Health centers brings an additional $200
            million in other resources into communities, and helps 1
            million people (including 350,000 uninsured persons) get the
            care they need, creating invaluable community assets.
        Despite achieving remarkable progress in responding to the current
    health care crisis, Health Centers increasingly are feeling the strains
    brought on by the continuing erosion of private insurance coverage,
    stagnant or shrinking public subsidies and the pressures of a
    restructured marketplace now driven by competitive forces. Over the
    past three years, centers have added more than 1 million new uninsured
    patients to their roles (out of 2 million total new patients). This
    growth in new uninsured health center patients is widespread and
    underscores the declining ability of providers in all communities to
    continue to serve the uninsured. The expansion of managed care and the
    implementation of welfare reform is likely to make this situation even
    more pervasive in the future.
        New funds were appropriated in fiscal year 1997 but that amount
    will enable the funding of only 30 new Health Centers, and care for
    another 120,000 new uninsured patients across the country. Over the
    past 5 years, nearly 700 community group requested funding but could
    not be funded due to lack of funds.
        NACHC believes additional federal investment is needed to assure
    the availability of primary and preventive health care in every
    medically underserved community. Health centers have been faced with
    the challenge of caring for an ever-increasing number of people seeking
    care in an era of stable or declining resources and shortages of
    primary care health professionals. As the number of uninsured persons
    increase, there must be a system in place that will provide essential
    health care services, especially for the most vulnerable, underserved
    people in our communities and in our nation. The Health Center system
    is already in place, it is cost-effective, efficient, accountable, and
    it works. We urge you to build on it.
        As you consider the fiscal year 1998 appropriations, we recommend
    the following investments:
      --Community Health Centers (i.e., community, migrant, homeless and
            public housing): $882 million.--This amount would support the
            development of health center services for an additional 300,000
            low income uninsured persons, in addition to the 4 million
            uninsured and 6 million others we currently serve. Of the
            increase provided for Community Health Centers, we recommend
            that the Committee make available up to $5,600,000 for loan
            guarantees for loans to be made to health centers for the costs
            of developing and operating managed care networks or plans, and
            for loans to be made for the construction, renovation and
            modernization of facilities that are owned and operated by
            health centers. Similar language was included by the
            Subcommittee in its fiscal 1997 bill and Committee report.
      --National Health Service Corps: $145 million.--This amount would
            provide for the placement of an additional 300 primary care
            health professionals in underserved areas. The NHSC works with
            local communities, and delivers health care services where the
            unmet need is greatest, enhancing the ability of health centers
            and other health care organizations in frontier, rural and
            inner city communities to care for significant numbers of
            uninsured persons, as well as Medicare and Medicaid recipients.
            Over half of the NHSC providers work at Health Centers and 60
            percent of practice in rural HPSAs. In addition, the NHSC
            supports 29 State Loan Repayment Programs, which leverages
            state matching funds to place primary care health professionals
            in HPSAs, and the NHSC Fellowships Program, which provides
            community-based experiences for health professions students
            with the goal of encouraging them to practice in underserved
            areas. Without the NHSC, many of these areas would not be just
            underserved, they would be unserved.
      --Black Lung Clinics.--$5 million. This amount would provide black
            lung services for another 5,000 coal miners. Black Lung Clinics
            are a vital source of care for coal miners suffering from Coal
            Workers Pneumoconiosis, commonly called Black Lung disease,
            which affects an estimated 4.5 percent of all coal miners
            today. These clinics provide medical diagnosis, treatment,
            education, and preventive care to more than 20,000 individuals,
            helping to substantially reduce the need for costly hospital or
            specialty care services. Without federal support through the
            Black Lung Clinics program, many of these clinics will be
            forced to reduce or discontinue services to this needy
            population.
      --Ryan White AIDS/Title III-B: $113.6million.-- This amount would
            provide care to an additional 75,000 individuals with (or at
            risk for) HIV or AIDS. The Ryan White Early Intervention (Title
            II-B) program supports comprehensive ambulatory HIV/AIDS
            services, including risk reduction counseling/testing and
            prevention, for more than 125,000 low income persons through
            Health Centers and other community-based health providers in
            underserved inner-city and rural areas.
        Even with these support levels, Health Centers would be able to
    offer care to less than 1 out of every 3 Americans who will lose their
    health insurance this year alone.
        We have labled our recommended funding levels as an investment. It
    is an investment that will help to reverse an alarming trend toward a
    growing under class in this country. Compelling need dictates that we
    act to utilize proven systems of care to foster wellness and
    prevention. If funded adequately, the expanded presence of health
    centers and the availability of basic health services will contribute
    to a healthier, more productive America.
        Health Centers were founded with a vision of community and consumer
    empowerment, and their experience over the past 30 year provides an
    object lesson on how consumer involvement can succeed where other
    models fail. Invest in health centers, build upon what has worked, look
    at the long history and success of the program and continue to invest
    in programs that mobilize communities to solve problems at the local
    levels.
        NACHC appreciates the opportunity to comment on these vital
    programs and look forward to working with the Subcommittee in support
    of them.
                                     ______

      Prepared Statement of the American Association of Nurse Anesthetists
        The American Association of Nurse Anesthetists is the professional
    association that represents over 26,000 certified registered nurse
    anesthetists (CRNAs) in the United States. AANA appreciates the
    opportunity to provide our experience regarding federal funding for
    nurse anesthesia educational programs under Title VIII, the Nurse
    Education Act (NEA). Many members of our association have benefited
    greatly over the years from the Title VIII programs, which in turn has
    benefited the health care system by assisting in the maintenance of a
    stable supply and adequate number of anesthesia providers.
                       background information about crnas
        In the administration of anesthesia, CRNAs perform many of the same
    functions as physician anesthetists (anesthesiologists) and work in
    every setting in which anesthesia is delivered including hospital
    surgical suites and obstetrical delivery rooms, ambulatory surgical
    centers, health maintenance organizations, and the offices of dentists,
    podiatrists, ophthalmologists, and plastic surgeons. Today, CRNAs
    administer approximately 65 percent of the anesthetics given to
    patients each year in the United States. CRNAs are the sole anesthesia
    provider in more than 70 percent of rural hospitals which translates
    into anesthesia services for millions of rural Americans. CRNAs are
    also front line anesthesia providers in underserved urban areas,
    providing services for major trauma cases, for example.
        CRNAs have been a part of every type of surgical team since the
    advent of anesthesia in the 1800s. Until the 1920s, anesthesia was
    almost exclusively administered by nurses. In addition, nurse
    anesthetists have been the principal anesthesia provider in combat
    areas in every war the United States has been engaged in since World
    War I. Though CRNAs are not medical doctors, no studies have ever found
    any difference between CRNAs and anesthesiologists in the quality of
    care provided, which is the reason no federal or state statute requires
    that CRNAs be supervised by an anesthesiologist. Anesthesia outcomes
    are affected by such factors as the provider's vigilance rather than
    the title of the provider--CRNA or an anesthesiologist.
        The most substantial difference between CRNAs and anesthesiologists
    is prior to anesthesia education, anesthesiologists receive medical
    education while CRNAs receive a nursing education. However, the
    anesthesia education offered is very similar for both providers and
    both professionals are educated to perform the same clinical anesthesia
    services: (1) preanesthetic preparation and evaluation; (2) anesthesia
    induction, maintenance and emergence; (3) postanesthesia care; and (4)
    peri-anesthetic and clinical support functions, such as resuscitation
    services, acute and chronic pain management, respiratory care, and the
    establishment of arterial lines.
        There are currently 87 accredited nurse anesthesia education
    programs in the United States, 84 of which offer a master's degree. The
    other 3 programs are modifying their curricula to meet the requirement
    for all programs to offer master's degrees by 1998.
            the goals of the health professionals education program
        Title VIII has supported the education of our nation's nurses since
    the 1960s. It provides programs for direct student assistance as well
    as grants to institutions for expansion or maintenance of education.
    While initially the programs focused on increasing enrollments, in the
    mid-1970s they began to shift toward increasing the number of primary
    care providers and increasing the number of professionals serving in
    rural or underserved areas.
        In the last reauthorization of Title VIII in 1992; Congress
    directed that Title VIII programs target funds to schools placing
    graduates in medically underserved communities and emphasized primary
    care. More recent proposals for the reauthorization of this program
    have also identified the goal of improving the distribution of health
    professionals in underserved areas. The investment in the education of
    nurse anesthetists would assist in all of these goals:
    Increased Access to Primary Care
        CRNAs are traditionally not defined as primary care providers, but
    provide services that support primary care. For example, a facility or
    professional that provides obstetrical care to pregnant women is
    generally recognized as providing primary care. Offering an epidural
    during labor and delivery is part of that obstetrical care; therefore,
    the CRNA provides services and supports primary care, and are vital to
    the quality of primary care. Often the CRNA is the only provider of
    such services in rural areas. Because of the interdependence between
    primary care and anesthesia, continued federal support for nurse
    anesthesia education will assist in reaching the federal goal of
    increasing access to quality primary care across the country.
    Service in Underserved or Rural Areas
        CRNAs are the sole providers of anesthesia in more than 70 percent
    of rural hospitals. Anesthesia provided by CRNAs allows these rural
    facilities to provide obstetrical, surgical, and trauma stabilization
    that would otherwise not be possible for millions of Americans in rural
    areas. Continued federal support of Title VIII programs will ensure a
    stable supply of CRNAs to rural facilities all across the country. In
    addition, many nurse anesthesia programs are located in medically
    underserved urban areas and produce graduates that eventually enter
    practice after graduation in these same communities.
        Since the educational costs of preparing CRNAs are far less than
    those of preparing anesthesiologists, yet they provide virtually the
    same care, the federal government has received a generous return on
    their investment of Title VIII funding in the education of CRNAs. The
    average annual program cost per student nurse anesthetist is $11,741.
    With the average length of a nurse anesthesia program being 27 months,
    the total cost per student is $26,417 ($11,741 per year  2.25
    years). In contrast, according to data from the Health Care Financing
    Administration, the average annual cost per medical resident in a
    residency program was $84,837 in 1990. Therefore, the total cost per
    student for a four year anesthesiologist residency is $339,400 ($84,837
    per year  4 years). Therefore, for the same cost of preparing
    one anesthesiologist, you can prepare at least 10 CRNAs.
          nurse anesthesia programs produce stable supply of providers
        A 1994 General Accounting Office (GAO) study on Health Professions
    Education reported that the overall number of primary care physicians
    providing patient care rose by 75 percent between 1975 and 1990; yet,
    the population as a whole rose by only 17 percent. The result has been
    a physician surplus, while a maldistribution of providers remains.
        Yet the same is not true for other professions. The surplus of
    physicians as found in the GAO report does not necessarily translate to
    a surplus of all providers. Nurse anesthesia programs across the
    country have stabilized in the number of graduates produced each year,
    averaging approximately 900-1000 new nurse anesthetists entering
    practice annually. In 1995 there were 1045 graduates, and 1996 produced
    1069.
        Data has shown that a continued supply of 1000 graduates per year
    will provide the country with a stable, adequate source of anesthesia
    providers. Ongoing research by Michael Fallacaro, CRNA, DNS, past
    Chairman of the AANA Education Committee, has established that the
    current ratio of approximately 8.5 CRNAs per 100,000 population is
    adequately meeting societal demands. In addition, his research shows
    that adding 1000 new nurse anesthetist graduates into the system each
    year through 2020 would ultimately result in a similar ratio of 8.5 to
    9.6 CRNAs per 100,000 population, depending on the average retirement
    age.
    [GRAPHIC] [TIFF OMITTED] T07JU11.007

        On the other hand, a drop in the number of graduates to 800 per
    year would result in an eventual decrease in the number of CRNAs to 7.0
    to 8.1 per 100,000 population.
    [GRAPHIC] [TIFF OMITTED] T07JU11.008

        Therefore, by continuing the trend of graduating approximately 1000
    students per year, nurse anesthesia programs appear to be producing not
    a surplus of providers, but an adequate number to meet societal needs.
        In order to maintain this number of graduates, CRNA students need
    continued federal support. Nurse anesthesia programs require a rigorous
    course of study that does not allow students the opportunity to work
    outside their educational program. Nurse anesthesia programs are
    virtually all full-time, with part-time study a rare occurrence.
    Therefore, nurse anesthesia students rely heavily on federal funding to
    assist them in meeting financial obligations during their study.
    Without this assistance, the number of nurse anesthesia graduates would
    surely decline. A decline in the number of nurse anesthetists would
    then result in a decline in the accessibility to services, primarily in
    rural areas that depend on non-MD providers for the majority of their
    care.
                      recommendation for fiscal year 1998
        In the past, CRNAs had a $4 million authorized line-item
    appropriation within Title VIII which was divided between direct
    student support in the form of traineeships, faculty fellowships to
    increase the number of doctoral-prepared faculty, and toward the start-
    up costs and expansion for new nurse anesthesia programs. This line-
    item has proven extremely successful in the past, and each year the
    appropriation for nurse anesthetists has been totally expended. AANA
    would like to see it continue in the future.
        AANA recommends continued federal funding for all nursing education
    at the level of $67.32 million, including a $2.848 million set-aside
    for nurse anesthetists in fiscal year 1998.
        For further information, please contact Greta Todd, AANA Associate
    Director of Federal Government Affairs, at 202/484-8400.
                                     ______

     Prepared Statement of the American College of Preventive Medicine and
               the Association of Teachers of Preventive Medicine
        The American College of Preventive Medicine (ACPM) and the
    Association of Teachers of Preventive Medicine (ATPM) are pleased to
    submit jointly this statement concerning appropriations for federal
    activities in disease prevention and health promotion. ACPM is the
    national medical specialty society of physicians whose primary interest
    and expertise are in preventive medicine. ATPM is the professional
    organization of academic departments, faculty and others concerned with
    undergraduate and postgraduate medical education in preventive
    medicine. Together, these organizations are proud to offer the public a
    high degree of knowledge and skill in disease prevention and health
    promotion.
        ACPM and ATPM urge the Subcommittee to maintain federal support for
    prevention. In particular, we urge a minimal increase in the level of
    funding for preventive medicine residency training and for training
    other public health professionals included in Title VII of the Public
    Health Service Act. We also urge an increase for the activities of the
    Centers for Disease Control and Prevention and an earmark for the
    invaluable work of the Office of Disease Prevention and Health
    Promotion in the Office of the HHS Secretary.
        We are well aware of the fiscal constraints that this Subcommittee
    faces and we do not make these recommendations lightly. However, we are
    deeply concerned that weakening our nation's efforts in disease
    prevention and health promotion will become an unintended consequence
    of necessary reductions in discretionary appropriations. At a time when
    the private sector is struggling mightily to contain medical care
    costs, the nation can ill afford a diminution in public health efforts
    to prevent disease that only the government can conduct. Compared to
    the vast sums of public funds that are spent on curative medicine, the
    amounts that we recommend be targeted to prevention are small indeed.
    Training in Preventive Medicine and Public Health--$9 million
        Prevention, in its broadest sense, is practiced by all physicians
    and other health professionals who help their patients stay healthy. It
    also is the principal goal of our nation's state and local health
    departments, who perform core functions in health protection and
    promotion that no single private institution or health provider can
    fulfill. The specialty of preventive medicine bridges the gap between
    the perspectives of clinical medicine and public health.
        The tools of preventive medicine are the population-based health
    sciences, including epidemiology, biostatistics, environmental and
    occupational health, planning, management and evaluation of health
    services, and the social and behavioral aspects of health and disease.
    These are the classic tools of practice in public health agencies, but
    they have grown in importance in other health care settings where there
    is increasing recognition that improving the health of a patient
    population and reducing the costs of medical care also require
    application of the population-based health sciences.
        Departments of preventive medicine, community medicine, or social
    medicine in medical schools, schools of public health, and preventive
    medicine residency programs (which are located in medical schools,
    schools of public health, and a few health departments), are the loci
    of expertise in the population-based health sciences. Federal support
    for preventive medicine training and public health training is
    essential to help meet the workforce needs not only of public health
    departments, but also of a rapidly-evolving health care system that
    must be cost-effective and accountable.
        The small sums appropriated for preventive medicine residency
    training under Section 763 in Title VII of the Public Health Service
    Act have been the exclusive federal support for programs training
    physicians in general preventive medicine and public health (other than
    the residency programs conducted by the Centers for Disease Control and
    Prevention and the military). Medicare graduate medical education funds
    have been largely unavailable to these programs because they are based
    not in hospitals but in community outpatient and public health
    settings. Because preventive medicine programs derive little or no
    revenue from one-on-one patient care, this common source of funds for
    physician training also is unavailable.
        Currently, residency programs scramble to patch together funding
    packages for their residents. Funding from any source is available for
    only 60 percent of preventive medicine residency positions. The
    remainder of the openings go unfilled due to lack of funds, and
    potential applicants must be turned away.
        A 1991 survey of all 1,070 graduates of general preventive
    medicine/public health residency programs from 1979 to 1989 conducted
    by Battelle, an independent consultant under contract to the Centers
    for Disease Control and Prevention and the Health Resources and
    Services Administration provided a clear picture of the accomplishments
    of the training programs and the impact of these federal funds. A
    majority of the graduates have initiated or managed major programs in
    prevention and control of infectious disease, chronic disease, sexually
    transmitted diseases, or maternal and child health. In addition to
    creating and running community health programs such as these, 60
    percent of the graduates engage in research in disease prevention and
    health promotion, and 70 percent also take care of individual patients.
        This survey also documented that funds invested in training these
    physicians have a lasting impact. Ninety percent of preventive medicine
    graduates remain involved in public health or preventive medicine.
    Moreover, Title VII funds were shown to be directly related to the
    viability of preventive medicine residency programs. In programs that
    have received federal grants, the number of graduates has more than
    doubled since 1983. Conversely, the number of graduates of programs
    that no longer receive federal funds has decreased significantly.
        The training of public health professionals is closely linked to
    preventive medicine. The nation's 28 schools of public health provide
    training for physician specialists in preventive medicine as well as
    for many other health professionals who comprise our public health
    workforce. In addition to the shortage of physicians trained in
    preventive medicine, there are shortages of epidemiologists,
    biostatisticians, environmental and occupational health specialists,
    public health nutritionists and public health nurses. In addition to
    Section 763, Sections 761 and 762 of Title VII (Public Health
    Traineeships and Public Health Special Projects) support public health
    training in these areas. An appropriation of $9 million for Sections
    761, 762, and 763 in fiscal year 1998 will allow for the continuation
    of efforts to build the nation's cadre of prevention professionals.
    Finally, ACPM and ATPM support the Health Professions and Nursing
    Education Coaltion's (HPNEC) recommendation of $302 million for all of
    the health professions education programs funded under Titles VII and
    VII of the Public Health Service Act.
    Centers for Disease Control and Prevention--$3 billion
        Physicians working in preventive medicine and public health rely
    heavily on the expertise and activities of the Centers for Disease
    Control and Prevention, the nation's premier agency for disease
    prevention and health promotion. Therefore, we support, alongside many
    other organizations and coalitions with a concern for prevention,
    including the Coalition for Health Funding and the CDC Coalition, a
    total CDC appropriation of $3 billion.
        Through funding of state and local prevention programs, research,
    training and surveillance, CDC has a major impact on every important
    issue in prevention. Compared to the billions that are spent on acute
    health care, our national investment in prevention continues to lag.
    The increases in health care costs we have witnessed are not a reason
    to cut back on funds appropriated for prevention. They are a reason to
    make a large investment now. Given the resources, CDC can play a
    critical role in revitalizing programs and services of proven
    effectiveness in reducing death and disability in this country.
    Reducing CDC funds would be an act of extraordinary short-sightedness.
    Time and again we have seen, as in the cases of tuberculosis and
    measles, when public health efforts falter, the nation pays a high
    price later in the costs of preventable disease.
    Office of Disease Prevention and Health Promotion--$4.6 million
        The Office of Disease Prevention and Health Promotion (ODPHP)
    stands out among federal agencies for its ability to leverage small
    amounts of funding into large accomplishments in highly innovative
    ways. ODPHP manages the Healthy People 2000 initiative, the national
    prevention strategy used by health agencies across the nation to set
    measurable objectives for health improvement. ODPHP provides guidance
    and prototype materials to health practitioners through the Put
    Prevention Into Practice project. It is conducting ground-breaking
    research concerning the cost-effectiveness of preventive services, and
    has long served as the focal point for coordinating departmental
    activities in prevention as well as innovative public-private
    partnerships. Explicit support for ODPHP is vital in signaling a
    continued federal commitment at the Secretary's level to leadership in
    prevention. We urge the Subcommittee to earmark $4.6 million for this
    office, an amount equivalent to fiscal year 1995 funding, before the
    budget for this office was incorporated into the amounts appropriated
    for the Office of the Secretary.
                                     ______

        Prepared Statement of the American Academy of Family Physicians
        The 85,000 member American Academy of Family Physicians would like
    to submit this statement for the record on an issue of critical
    importance to our organization, appropriations for Section 747 of the
    Public Health Service Act for family practice training, appropriations
    for the Center for Primary Care Research at the Agency for Health Care
    Policy and Research and funding for rural health programs.
        The American Academy of Family Physicians strongly supports
    increased funding for Section 747. Section 747 is the only federal
    program that provides targeted funding through grants for family
    practice residency training and funding for establishing and
    maintaining medical school departments of family medicine, predoctoral
    programs and faculty development. While Section 747 must be
    reauthorized this year, it is currently authorized at $54 million and
    received an appropriation of $49.3 million in fiscal year 1997.
    Recommendation
        Based on a review of future needs of the country for a more
    appropriate number of family physicians, the Academy supports a fiscal
    year 1998 funding level of $87 million for Section 747. This
    recommendation would provide funds for 20 new and developing residency
    training programs, 12 new and developing departments, 24 medical school
    clerkships, 700 new faculty and a number of innovative demonstration
    projects. The recommendation is the result of a strategic plan
    developed by the Academic Family Medicine Organizations, which includes
    all five family medicine organizations.
    Background
        Any attempts to control costs and maintain quality in the American
    health care system will be frustrated by a structural problem in our
    country: the shortage of generalist physicians. While in most countries
    at least 50 percent of physicians are generalists (family physicians,
    general internists and general pediatricians), the US physician
    workforce is made up of more than 70 percent subspecialists and only 30
    percent generalists. Family physicians make up only 13 percent of the
    total.
        Most experts believe that a physician workforce of 50 percent
    generalists and 50 percent subspecialists would best meet America's
    health care needs. The Physician Payment Review Commission, Council on
    Graduate Medical Education, The PEW Foundation, Institute of Medicine,
    American Medical Association and Association of American Medical
    Colleges all advocate increasing the supply of generalist physicians.
        During the 1960's, 1970's and 1980's, the nation's primary care
    workforce declined from a majority of the workforce to approximately
    one-third today. Section 747 grants were a response to that decline,
    and the infrastructure they have helped establish is beginning to
    reverse the downward trend in primary care. During the 1990's, the
    number of medical students electing primary care residencies,
    participating in family practice residencies, is increasing, however,
    the percentage is still only about one-third of graduating medical
    students. Much more progress is needed to begin to affect the national
    shortage. Section 747 support needs to be enhanced maintained to
    provide a modest incentive for training more of the physicians America
    needs most. A recent March, 1996, study by the Institute of Medicine
    ``encourages support for training of a primary care workforce.''
        Medicare payment policies contribute significantly to the
    overspecialization of physicians. These policies promote training in
    the expensive inpatient specialties that involve numerous procedures
    rather than in family practice and other generalist specialties.
    Medicare GME payments go exclusively to hospitals, where subspecialist
    physicians are primarily trained, rather than to ambulatory care sites,
    i.e., clinics and offices, where generalist doctors receive much of
    their training. A May, 1994 General Accounting Office (GAO) report
    reiterated that ``barriers to primary care training persist in
    Medicare's payment method.
        NIH funding also contributes to the overspecialization of
    physicians. NIH grants, amounting to billions of dollars, go primarily
    to the subspecialist projects in the nation's medical education
    complexes, providing powerful incentives to promote subspecialization
    to develop the capacity to secure grants.
        Moreover, a recent study conducted by KPMG Peat Marwick in
    September, 1995, indicated that Medicare spending could be reduced by
    at least $48.9 billion and as much as $271.5 billion over the next six
    years if primary care physicians were 50 percent of the total physician
    workforce. The analysis revealed a direct correlation between the
    availability of primary care physicians and the reduction of health
    care costs. The Role of Primary Care Physicians in Controlling Health
    Care Costs: Evidence and Effects is a comprehensive review of existing
    studies on the role of primary care physicians in controlling health
    care costs.
    Federal Funding for Family Practice
        Section 747 is essential to provide at least a small incentive to
    offset the financial disadvantages that family medicine residencies and
    departments face. Until Medicare GME preferentially supports primary
    care training, and until primary care medical research is funded at
    more than a tiny fraction of subspecialist research, family practice
    residency programs and medical school departments will remain highly
    dependent on grants from Title VII.
    Unmet Need for Family Physicians
        Family physicians are distributed in urban and rural areas in the
    same proportion as the US population as a whole--unlike any other
    physician specialty. Even so, 149 counties representing 550,000
    individuals have no physician at all. In addition, family practice
    residency training programs that receive Section 747 funding place
    greater numbers of graduates who locate in rural and underserved areas
    than programs that do not receive that funding.
        Managed care organizations are preferentially recruiting family
    physicians. However, 43 percent of salaried and 29 percent of capitated
    plans report that it takes one year or more to recruit a new primary
    care physician.
        In community health centers, which rely heavily on primary care
    physicians, 52 percent report difficulty recruiting primary care
    physicians.
        The US population 65 years of age and older will rise about 2
    percent per year between now and the year 2020. Older people will
    require a wide range of health care services, including preventive,
    primary, long-term, rehabilitative and hospice care--services that will
    require a substantial increase in the number of family physicians.
                 data and outcomes that prove section 747 works
    Family Practice Residency Training Programs
        Approximately 90 percent of physicians who complete family practice
    residency programs work in direct primary patient care and are able to
    handle 85-90 percent of their patient's problems. (By contrast, over
    half of internal medicine residents subspecialize along with one-third
    of pediatric residents.) Section 747 grants to family practice
    residency programs have helped increase the number of training programs
    from 175 to 380 between 1975 and 1996. However, the nation needs 20-30
    new programs and significant expansion of many existing programs to
    achieve a balanced workforce.
        In contrast to other specialties, 80 percent of family practice
    residencies are located in community settings rather than in major
    tertiary care teaching hospitals. These residencies provide more
    ambulatory training than any other residencies. As a result, family
    practice residencies do not have access to the considerable resources
    that flow to teaching hospitals. Further, 25 percent of family practice
    residencies occur in public hospitals. These hospitals receive low
    reimbursement for patient care services, as well as fewer Medicare
    patients. As a result, they do not receive substantial Medicare
    graduate medical education dollars. Section 747 is vital to the
    survival and expansion of these critical residency programs.
    Family Medicine Departments in Medical Schools
        Section 747 grants for establishing departments of family medicine
    have resulted in eight new departments in the past five years. However,
    twelve of the nation's 124 medical schools still do not have
    departments of family medicine. An October, 1994 GAO report indicated
    that ``students who attended schools with family practice departments
    were 57 percent more likely to pursue primary care.'' The same report
    indicated that ``students attending medical schools with more highly
    funded family practice departments were 18 percent more likely to
    pursue primary care.'' Section 747 dollars are crucial to establishing
    these family practice departments and to graduating students into
    primary care careers, as well as to keep these important departments
    financial solvent.
    Predoctoral Programs
        Funding for predoctoral programs--third-year medical school
    clerkships in which students learn primary care clinical skills--under
    Section 747 encourages medical schools to create required third-year
    clerkships in family medicine. However, 24 of the nation's 124 medical
    schools still do not have required third-year clerkships in family
    medicine. Requiring a third-year clerkship of more than four weeks
    duration results in 15.6 percent of a school's graduates choosing
    careers in family medicine, compared to 6.9 percent of the graduates of
    schools without required third-year clerkships. Moreover, the October,
    1994 GAO report indicated that ``students who attended schools
    requiring a third-year family practice clerkship were 18 percent more
    likely to pursue primary care.'' Section 747 funding increased the
    number of medical schools with clerkships to 100, but continued funding
    is necessary to maintain and increase that number.
    Faculty Development
        There is an acute shortage of faculty for family practice residency
    programs and family medicine departments as the discipline has been
    successful at placing its graduates in practice settings serving
    communities of need rather than in full-time faculty positions. Without
    adequate funding, there is a risk that even the progress that has been
    made so far will be compromised for lack of faculty.
                   agency for health care policy and research
        While American medicine is praised worldwide for its excellence in
    biomedical research, it has often failed to translate these
    breakthroughs to practical treatment that will apply to the population
    at large. It is imperative that US research facilities complement their
    superb understanding of high-tech research with a similar dedication
    both to applying state of the art medicine to primary care settings and
    research to improve the delivery of primary care and preventive
    medicine so that there is less of a need for high-tech subspecialty
    care.
        Therefore, the Academy strongly supports the Center for Primary
    Care Research within the Agency for Health Care Policy and Research
    (AHCPR). The Academy supported AHCPR's establishment and, in
    particular, the agency's statutory authority to support clinical
    practice research to include primary care and practice-oriented
    research. In fact, the 1992 Senate Report 102-426 accompanying Public
    Law 102-410, which reauthorized AHCPR most recently, states that the
    Agency should strengthen its commitment to family practice and primary
    care research. The report asserts that: ``The committee believes that
    inadequate attention has been given to conditions that affect the(se)
    vast majority of Americans--that is, the undifferentiated problems
    individuals present to their generalist physicians. A focus on family
    practice/primary care research is essential if we are to redirect the
    US health care system that is currently skewed toward high technology
    medicine for catastrophic diseases.''
        Although over 95 percent of all medical conditions have been
    evaluated and treated outside of hospitals over the last 30 years,
    physicians are educated and trained using a knowledge base derived from
    hospitalized patients, or patients with complex conditions who were
    referred to specialists. This base of knowledge has frequently little
    relevance to the basic, entry-level concerns that affect most people.
    As a result, American health care is tilted toward institutions and
    systems that employ highly technological methods to treat catastrophic
    and end-stage disease. The consequences of this situation are serious;
    the US health care system has inadequate emphasis on cost-saving
    preventive care, scarce medical resources are delivered inefficiently,
    and costs continue to spiral upward.
    Primary Care Research
        As a result, a primary care research agenda is crucial. This agenda
    should be designed to provide new tools to family physicians and other
    generalist physicians as they serve the millions of patients they see
    each year. Such an agenda would include research to improve diagnostic
    accuracy because most people go to doctors with cluster of ill-defined
    symptoms. The job of the generalist physician is to make sense out of
    these symptoms; determining whether or not they constitute a short-term
    problem or one requiring ongoing or intensive treatment, and then
    initiating effective therapy. Primary care research would assist
    physicians in streamlining the diagnostic process and increasing
    accuracy while at the same time reducing their use of expensive,
    unnecessary or potentially dangerous medical tests.
        Finally, generalists and subspecialists must learn to work together
    to provide a continuum of appropriate medical care. Familiar symptoms
    such as chest pain, headache, fatigue and insomnia bring millions of
    Americans to their physicians each year, symptoms that may or may not
    represent serious conditions. It is imperative that generalists and
    subspecialists work together to discern the causes, evolution and
    management of human suffering.
        To support this critical--and timely--line of research, the Academy
    requests that additional appropriations be provided to the Agency for
    Health Care Policy and Research, and that dollars be targeted
    specifically to the Center for Primary Care Research. We believe that
    supplementary funding, coupled with direction from Congress, will
    permit AHCPR to address primary care issues. We recommend $50 million
    for this effort.
    Rural Health Programs
        Finally, the Academy supports continued funding for several rural
    health programs. In particular, we support the state offices of rural
    health, the federal office of rural health, area health education
    centers and the National Health Services Corps. Continued funding for
    these programs is vital if we wish to provide health care services to
    America's rural citizens.
    Conclusion
        Section 747 of the Public Health Service Act is a program that
    successfully produces family physicians who serve both urban and rural
    parts of our nation, are preferentially recruited by managed care
    organizations and who can take care of 85-90 percent of their patient's
    problems. Numerous organizations and reports point out the cost-
    effective nature of family physicians, as well as how family practice
    residency programs, departments, predoctoral programs and faculty
    development programs efficiently produce more family physicians for
    this country.
        At a time when policymakers are critically reviewing government
    programs for their cost-effectiveness and overall value, Section 747 is
    a program that scores high on both fronts; it works. On behalf of the
    American Academy of Family Physicians, we ask you to appropriate
    funding for Section 747 of $87 million. In addition, scant research is
    available on basic patient care. The American Academy of Family
    Physicians recommends $50 million for the Center for Primary Care
    Research at the Agency for Health Care Policy and Research. Finally, we
    ask for continued funding for the rural health programs that help
    provide health care to rural Americans.
        Thank you for your attention to these important requests.
                                     ______

       Prepared Statement of the Association of Schools of Public Health
        We are grateful for the opportunity to submit testimony on behalf
    of our association \1\ regarding the fiscal year 1998 appropriations
    request for the academic public health programs administered by the
    U.S. Public Health Service of the Department of Health and Human
    Services (DHHS). These programs support our graduate students
    (traineeships), public health faculty (special projects), public health
    physicians (preventive medicine residencies), minority recruitment
    programs (HCOP), prevention related research at NIH, maternal and child
    health training initiatives, health services research (AHCPR), CDC
    training (NIOSH) and prevention activities (prevention centers, injury
    control centers), among others.
    ---------------------------------------------------------------------------
        \1\ The Association of Schools of Public Health (ASPH) is the only
    national organization representing the deans, faculty, and students of
    this nation's 28 accredited schools of public health in the United
    States and Puerto Rico. These schools have a combined faculty of over
    2,500 and educate more than 15,000 students annually from every state
    in the U.S. and most countries throughout the world. The schools
    graduate approximately 5,000 professionals each year. The 28 schools of
    public health constitute a primary source of comprehensively trained
    public health professionals and specialists in short supply to serve
    the federal government, the 50 states and private sector. According to
    the Pew health professions commission, managed care will increase the
    need for public health professionals. And according to saDHHS,
    ``significant shortages of professionals and academic faculty in the
    public health fields of epidemiology, abiostatistics, environmental and
    occupational health, public health nutrition, public health nursing,
    maternal and child health and preventive medicine.''
    ---------------------------------------------------------------------------
        While there are no scientific studies to accurately establish the
    precise national shortages of public health professionals, experts
    agree that there is a shortage of adequately trained, public health
    professionals, including epidemiologist, biostatisticians,
    environmental health specialists, public health nurses and physicians,
    among others: (``HHS Secretary's Report to Congress on the Status of
    Health Personnel in the U.S., 1991). The 28 schools of public health
    (list attached), in 20 states and Puerto Rico, constitute the primary
    source of comprehensively-trained public health professionals and
    specialists to serve the federal government, the 50 states, and the
    private sector.
        According the a DHHS report to Congress, the need for trained
    public health professionals could double the current level. The need
    has intensified with the proliferation of health programs mandated by
    Congress, and the expanded responsibilities of health organizations
    under managed care. In 1994, a report by Robert Harmon, MD, MPH, to the
    DHHS assistant secretary for health, sustained earlier DHHS
    observations on the need for more public health professionals. His
    findings revealed ``significant shortages of professionals and academic
    faculty in the public health fields of epidemiology, biostatistics,
    environmental and occupational health, public health nutrition, public
    health nursing, and preventive medicine.''
        State/local health department directors have reported that the lack
    of practical knowledge and skills in the core sciences of public health
    and preventive medicine have restricted the effectiveness of their
    agencies. In order to improve the quality of the American public health
    infrastructure, and therefore, to properly set the stage for reform and
    prevention, we must provide adequate training, education and continuing
    education to the public health workforce. National health groups--
    especially maternal and child health agencies and state/local health
    officials--agree that regional shortages of adequately trained
    professionals present the most significant barrier to providing
    population-based prevention initiatives, in general and ensuring the
    delivery of quality health care to underserved individuals and under
    represented populations, in particular. Health professionals trained to
    handle the unique demands of rural and inner-city public health issues
    are in the shortest supply.
        The Council on Graduate Medical Education (COGME) has reported
    continued shortages in the field of preventive medicine and has
    recommended increasing the percentage of physicians trained and
    certified in public health and preventive medicine as a national goal.
    Practitioners of population-based medicine are playing increasingly
    more important roles in building health care systems that are
    accountable for quality and health outcomes, especially now under the
    managed care environment.
        Also, the Pew Health Professions Commission reported that managed
    care will increase the need for public health professionals (``Critical
    Challenges: Revitalizing the Health Professions for the 21st Century,''
    Nov. 1995). The Pew commission is right. Recent trends in the changing
    health care system will force the health professions enterprise to
    focus its attention on teaching population-based approaches. Managed
    care will steer academic leaders in most schools of the health
    professions, specifically medicine, nursing, pharmacy and dentistry, to
    collaborate with faculty in schools of public health having the
    expertise in disciplines and areas of concentration that focus on
    improving the health of the public: epidemiology, biostatistics,
    outcomes research and analysis, risk assessment, chronic and infectious
    disease prevention, among others.
        Mr. Chairman we need to provide students with skills, competencies
    and knowledge to address the ``characteristics'' of the emerging care
    system that Pew commission outlined: orientation toward health;
    population perspective; intensive use of information; focus on the
    consumer; knowledge of treatment outcomes; constrained resources;
    coordination of services; reconsideration of human values; expectations
    of accountability; and growing interdependence. These skills,
    competencies, values and knowledge are taught principally in the 28
    accredited schools of public health.
        I would like to focus your attention on one CDC program in
    particular that merits specific recognition: prevention centers. In
    1995, CDC asked the IOM to review the program and to examine the extent
    to which it is meeting congressionally mandated objectives. The report
    was released last month and the committee found that the CDC prevention
    centers program ``has made substantial progress and is to be commended
    for its accomplishments in advancing the scientific infrastructure in
    support of disease prevention and health promotion policy, programs,
    and practices.''
        Mr. Chairman, we would like to go on record in support of the
    fiscal year 1998 recommendations of the following coalitions that will
    testify (or have testified) before your subcommittee: Ad Hoc Group for
    Biomedical Research; CDC Coalition; Coalition for Health Funding;
    Friends of AHCPR; Friends of NIOSH; Friends of Title V; and Health
    Professions and Nursing Education Coalition
        Mr. Chairman, the requests outlined by these coalitions represent
    the needs assessment that was derived from the views and expert
    opinions of this country's most respected administrators, scholars,
    scientists, and leaders in the volunteer sector. I know you and the
    subcommittee members will take them into serious consideration when
    marking-up the fiscal year 1998 appropriations bill.
        Mr. Chairman, public health is not just practiced in state and
    local health departments. In the next century, it will be practiced in
    hospitals, insurance companies, managed care organizations, community-
    based organizations (e.g., community health centers, United Way
    supported agencies, etc.), academic institutions, factories, religious,
    civic and fraternal organizations, among others. We must plan ahead and
    ensure that these organizations are staffed by a competent workforce
    equipped with the necessary skills, knowledge and competencies in the
    population-based sciences.
        Mr. Chairman, the 28 deans of the U.S. schools of public health
    appreciate the opportunity to express their views on continued federal
    support of public health programs, in general, and for public health
    professions, in particular. Your thoughtful consideration of our
    suggestions outlined below would be greatly appreciated.
        ASPH urges Congress to appropriate the following fiscal year 1998
    amounts for PHS programs of concern to the academic public health
    community.

                            [In millions of dollars]
    ------------------------------------------------------------------------
                                                   Fiscal year
                                                      1997       ASPH fiscal
                                                 appropriations   year 1998
                                                   (estimate)      requests
    ------------------------------------------------------------------------
    Public Health Traineeships (HRSA); Public
     Health Special Projects (HRSA); Preventive
     Medicine Residencies......................            8.0           9.0
    MCH Training (HRSA)........................            5.0           8.0
    CDC Prevention Centers.....................            8.0          14.0
    NIOSH Training (CDC).......................           13.0          14.0
    CDC Injury Centers.........................            7.0           8.0
    AHCPR (Total)..............................          143.6         163.0
    CDC Total (Billion)........................            2.3           2.5
    HRSA Total (Billion).......................            3.4           3.5
    NIH Total (Billion)........................           12.7          13.8
    ------------------------------------------------------------------------

                                     ______

     Prepared Statement of the National Association of AIDS Education and
                                Training Centers
        The AIDS Education and Training Centers (AETCs) are a network of 15
    regional training centers with more than 75 local performance sites
    that cover the entire nation, Puerto Rico, and the Virgin Islands. The
    AETCs provide HIV clinical training, information and technical
    assistance as part of the Ryan White CARE Act--Title V. The AETCs build
    capacity among health care and social service providers for effective
    and efficient HIV service delivery by providing access to state of the
    art treatment and prevention information. The AETC network provides
    training in the full spectrum of HIV care in urban and rural areas. The
    AETCs sustain and expand the base of health care providers who are
    educated and motivated to counsel, diagnose, treat and manage
    individuals with HIV infection and to assist in the prevention of high
    risk behavior that may lead to infection.
        Recent advances in the care and treatment of persons with HIV
    disease marks a time of cautious optimism for persons living with HIV
    disease and health care providers. Promising new drugs are prolonging
    the lives of many people living with AIDS and providing a renewed sense
    of hope to others. In the past year, clinicians have reported reduction
    in mortality of patients in clinical practice.
        However, the advent of these new drug therapies presents new
    challenges to AIDS health care providers, policy makers, people living
    with AIDS and those affected by this disease. Concerns have been raised
    within the AIDS community regarding the cost of these new treatments
    and their accessibility to those who need them. Current data suggests
    that these new therapies will not only extend and save lives, but also
    reduce health care costs for persons with HIV disease by reducing
    hospitalizations, emergency room visits, and more expensive clinical
    and diagnostic procedures.
        Given these new treatments, persons with HIV disease require not
    only drug therapy with new drugs such as protease inhibitors, but also
    a range of psychosocial and specialty clinical services provided by
    qualified and informed health care providers. Health care providers
    must be competent to prescribe the AIDS drug treatments that are
    administered in combination with other drugs and require the
    measurement of viral load and other clinical markers to monitor their
    effectiveness.
        It is critical that health care providers are informed about how to
    utilize these drugs in clinical practice. The new drugs are more
    complex to administer, requiring clinical decisions based upon patient
    clinical response. To avoid the development of viral resistance,
    clinicians need sophisticated skills to effectively monitor persons on
    combination antiretroviral therapy. The development of viral resistance
    has serious consequences for the patient since increases in viral
    burden have shown to correlate with more rapid disease progression.
        Such clinical knowledge and informed clinical decision making is
    clearly beyond the current knowledge base of all primary care
    providers. The dissemination of information about these drugs and
    appropriate prescriptive regimens requires continuous information
    exchange among experienced providers. Expert consultation regarding
    clinical management must be available to individual health care
    providers to assist them in this complex clinical management of their
    patients.
        The existing network of AIDS Education and Training Centers is the
    most effective means of providing this critical education to health
    care providers. The 15 AETCs are based in prestigious health science
    centers and work in collaboration with community based health centers
    and organizations. These programs now have almost a decade of
    experience developing and tailoring educational programs and clinical
    skills training to provider communities based upon regional and local
    needs. These recent clinical research advances translate into the need
    to expand health provider training to enhance the following areas of
    clinical capacity.
      --The AETCs have an established reputation for providing primary care
            physicians, nurse practitioners, nurses, physician assistants,
            and dentists with the knowledge and skills to identify persons
            with HIV and initiate antiretroviral treatment early. There has
            been an increase in the number of HIV infected persons being
            identified and seeking HIV early intervention. As more people
            seek care, additional health professionals will require
            education in order to meet the growing demand for experienced
            and knowledgeable clinicians.
      --Health care providers must be trained to appropriately prescribe
            and initiate complex monitoring of patient on these new
            combinations of antiretroviral drugs in order to maximize
            treatment effectiveness, improve the longevity and quality of
            life for persons with HIV, and reduce the chance of viral
            resistance. These new protocols include the need for absolute
            adherence to the plan of care in order to avoid resistance
            caused by viral mutation. Therefore, expert evaluation,
            prescribing and monitoring is essential. The AETCs are the only
            national program capable of providing intensive clinical
            training for health care providers in the identification of
            persons at risk, those requiring early antiretroviral
            treatment, as well as those needing on-going clinical
            management. Each regional AETC has developed the capacity for
            this type of clinical training.
      --Health care providers must continue to be updated with the clinical
            treatment regimens for opportunistic diseases and other
            complications of HIV infection. This is critical, despite
            promising advances, because persons who continue to progress in
            their disease require careful management of opportunistic
            diseases and perhaps palliative care. The AETCs have a
            structure and process for delivering programs on state of the
            art treatment nationwide.
      --The demographic profiles of persons infected with HIV have shifted
            to include more persons with a history of substance use. Health
            care providers must be trained about the unique issues involved
            in providing appropriate care for these populations. Health
            care providers require training in substance use treatment and
            the development of integrated service delivery systems.
      --Recent trends show that the most vulnerable populations, the poor,
            women, and the homeless, are at highest risk for HIV infection
            and AIDS. Providing primary care services for these populations
            requires health care providers sensitive to the special needs
            of these communities. Most health care providers have limited
            experience in delivering care to these populations. The AETCs
            have demonstrated the ability to provide education and training
            programs to prepare providers to deliver HIV services to these
            under-served populations.
      --The HIV epidemic is not over. While new therapies have begun to
            reduce the annual rate of death due to AIDS, Americans continue
            to acquire HIV infection at a steady rate. In fact, the
            absolute number of Americans with HIV infection and AIDS will
            continue to increase well into the next century. Health care
            providers must be continually trained in risk reduction for
            patients who are at risk for HIV infection to prevent the
            continued spread of HIV. The AETCs serve as educational and
            training resources for all HIV risk reduction and prevention
            programs nationally.
      --Recent advances in the use of antiviral treatment for the reduction
            of viral burden further underscore the importance of early
            intervention for persons infected with HIV to prevent disease
            progression. Health care providers need to be cognizant of the
            importance of early intervention and have the knowledge and
            skill to adequately manage persons with early HIV infection.
      --Now, more than ever, the development of ``systems of care'' for the
            delivery of more complex HIV clinical management is critical to
            assure that persons with HIV disease have access to appropriate
            and current medical and psychosocial treatment intervention.
            The AETCs provide important technical assistance to AIDS
            service organizations and groups, enhancing the HIV service
            delivery infrastructure and its functioning, avoiding
            duplication of effort to enhance the utilization of limited
            resources for service provision.
      --The care and treatment of persons with HIV is changing so rapidly
            that mechanisms for the dissemination of new clinical,
            psychosocial, and behavioral interventions and approaches must
            respond rapidly in order to save lives and reduce new
            infections. The development of newly developed clinical
            management guidelines will require that this information be
            provided to practicing clinicians. The AETCs are in the process
            of disseminating these new guidelines and have created a
            standardized education and training response to them.
        In the history of the AIDS epidemic, the need has never been
    greater for experienced, clinically up-to-date service providers. The
    public health approach of the AETC's utilizing program planning,
    evaluation and rapid dissemination of best clinical practices is an
    important vehicle for rapid response to national treatment
    developments. The AETCs have been faced with level funding since 1990
    and in 1996-97 funding was actually reduced. The impact of this
    reduction has had serious implications for the quality and availability
    of experienced clinicians caring for persons with HIV disease. The
    National Association of AIDS Education and Training Centers is
    therefore requesting $23 million for fiscal year 1998-99 in order to
    meet the growing demand for experienced, clinically up-to-date
    providers.
        The National Association of AIDS Education and Training Centers
    appreciates the opportunity to provide this testimony. We are available
    to assist with any additional information if needed.
                                     ______

     Prepared Statement of Kathye Gorosh, Project Director, the CORE Center
        I would like to thank the Chairman and the Members of this sub-
    committee for their support for the Cook County/Rush Health Center,
    which has been permanently named ``The CORE Center--For the Prevention,
    Care and Research of Infectious Disease.'' Their commitment has made a
    critical difference in the availability of appropriate health care
    services for those affected by and living with HIV and other infectious
    diseases in the greater Chicago area.
    The CORE Center: A Unique Solution for Chicago's Public Health Crisis:
        Today, despite major technological and scientific advances,
    devastating infectious diseases such as HIV/AIDS, Tuberculosis and
    Sexually Transmitted Diseases (STDs), these diseases remain prevalent
    in Chicago and around the world. Efforts must be sustained with
    continued vigilance to detect, treat, and cure Tuberculosis and STDs or
    their resurgence will be devastating. The HIV/AIDS epidemic continues
    to be one of the most serious public health problems facing the nation
    today. It is currently the leading cause of death among Americans
    between the ages of 25 and 44 years of age. Today, the Centers for
    Disease Control and Prevention (CDC) estimate that there are between
    650,000 and 900,000 Americans living with HIV in the United States. In
    1995, the CDC reported that our country had unfortunately reached
    another milestone in the AIDS epidemic--over a half million Americans
    had been diagnosed with AIDS. In 1996, it was reported that 362,004
    Americans had died of AIDS. These numbers continue to increase.
        Although the number of AIDS cases is what primarily gets reported
    by the press, the real focus should be on HIV, the virus that cause
    AIDS. While the development of new and more effective drugs has allowed
    people to remain healthier longer and to delay the progression from HIV
    to AIDS, it remains critical that we stop the spread of HIV as well as
    provide early and comprehensive care to those already infected. It is
    also critical to recognize that regardless of a decline in the number
    of AIDS related deaths in the U.S., there is not a decline in the need
    for adequate care, treatment and research for HIV/AIDS.
        Because of the resurgence of infectious diseases and HIV/AIDS, the
    Chicago area is in the midst of a severe public health crisis. Over
    35,000 people in the Chicago metropolitan area are currently infected
    with HIV/AIDS. Approximately, two-thirds of those infected are not
    receiving treatment.
        An examination of the profiles of patients who receive HIV services
    at Cook County Hospital reveals that Cook County Hospital cares for 75-
    80 percent of infected women and roughly one-third of infected children
    in the Chicago Eligible Metropolitan Area (EMA). Seventy-two percent of
    program clients at Cook County Hospital are African American. Of all
    the patients seen at the Cook County HIV Primary Care Center last year,
    916 (46.4 percent of all clients) of the patients seen were HIV
    positive and 986 (49.9 percent of all clients) of the patients seen
    were AIDS diagnosed.
        One in every 9-10 beds at Cook County Hospital is occupied by a
    person with HIV/AIDS. Approximately 30 percent of those inpatients
    could be seen on an outpatient basis if specialized services were
    available--saving $6 million per year.
        In addition to HIV/AIDS, sexually transmitted diseases continue to
    be a major cause of morbidity in the greater Chicago area. STDs, which
    increase the likelihood of HIV transmission three to five fold, have
    increased at alarming rates since the 1980s. In fact in 1996, the CDC
    reported that STDs--most of which are curable through the use of
    conventional treatments and drugs--accounted for 87 percent of the top
    10 percent of transmissible diseases in the nation.
        The landscape of the AIDS epidemic is changing daily--much faster
    than care providers are able to handle. Today, people of color make up
    nearly 50 percent of all reported AIDS cases. Those indirectly affected
    by AIDS also present a rapidly increasing need. For example, by the
    year 2000, it is expected that 144,000 children will be left motherless
    by the AIDS epidemic. Obviously, these new dimensions require new and
    innovative community-based prevention and care strategies.
        While the federal government has and will continue to provide
    leadership in the battle against AIDS and other infectious diseases,
    these afflictions will ultimately only be conquered at the local level
    through the implementation of comprehensive systems of care which
    involve every sector of the community.
        Regardless of these dramatic statistics, the serious increase in
    the demand for outpatient services and the obvious public health
    crisis, no comprehensive community-based system of specialized
    outpatient care and support services has been available to help reduce
    unnecessary, disruptive, and costly hospitalization while maintaining
    the quality of life for people with HIV/AIDS--until now.
    The CORE Center: For the Prevention, Care and Research of Infectious
            Disease:
        It is clear that we must take immediate and decisive action to
    address the HIV/AIDS crisis in the greater Chicago and across the
    nation. A community-based commitment is required to develop and
    coordinate the complex medical and social interventions necessary to
    address these diseases effectively. Both public and private local
    health care providers must develop the resources and linkages needed to
    effectively address this health crisis. As a result, Cook County
    Hospital and Rush-Presbyterian-St. Luke's have combined their resources
    to develop ``The CORE Center: For the Prevention, Care and Research of
    Infectious Disease.''
        Construction of The CORE Center, the result of an unprecedented
    public/private partnership, is scheduled to begin by this summer. The
    Center's design is the culmination of a focused team effort that has
    involved collaboration between HIV/AIDS patients, architects, doctors,
    nurses, other health care professionals, community members,
    representatives from the business community and government officials.
    It will provide a system of specialized health care and an array of
    support services for community-based health care providers to improve
    the care of persons with HIV or related infectious diseases who do not
    need to be hospitalized. As people continue to live longer with HIV/
    AIDS the demand for services, especially outpatient services, continues
    to increase. The CORE Center will provide that care and, at the same
    time, provide access to clinical trials and emphasize the importance of
    prevention and education in combating this epidemic.
        With a full range of services available for the first time in a
    centralized location, the Center will provide a missing link in the
    public health system thus creating a full continuum of community-based
    outpatient medical care for people with HIV disease who currently do
    not receive adequate care.
        The new 60,000, square foot, state-of-the-art, Center will boast
    many times the space now available for HIV/AIDS services at Cook County
    and Rush combined. The facility will combine and expand the
    capabilities of both institutions. The new Center will effectively
    house current programs and make it possible to address the growing
    numbers and needs of infectious disease patients.
    Prevention and Education:
        The HIV program at Cook County Hospital has responded to the
    current health crisis by providing extensive outreach, prevention and
    education services. In 1995 alone, the Women and Children's Program at
    Cook County Hospital went out into the community and educated 6,979
    children ages 11-14 about HIV risk reduction.
        Prevention and education are essential components of the Center's
    comprehensive approach to the care of HIV/AIDS and other related
    infectious diseases. The CORE Center will focus significant resources
    on community-wide prevention strategies and education programs. The
    Center's programs will include a major specialized training program for
    physicians and other health care professionals, including: clinical
    care, lectures, clinic observations and psychosocial interventions;
    targeted programs for people at risk, especially women, children, and
    minorities; HIV counseling and testing; and bilingual community forums
    to extend the reach of the Center's prevention and education programs.
    Prevention programs will be tailored for specific populations and the
    Center will actively recruit members of these populations to their peer
    education courses.
    Key Features and On-Site Services:
        The design of The CORE center is meant to provide a sense of
    security and dignity to patients and families. A primary focus in the
    design of the facility is the comfort and ease of use by patients and
    staff. Key design features include:
      --Graduate levels of care on each ascending floor of the four-floor
            facility--moving from education, prevention and screening
            programs on the first floor to treatment areas for the most
            seriously ill patients on the fourth floor.
      --Multi-functional space throughout the building so that clinical and
            administrative areas can be easily reconfigured to adjust to
            the development of new modes of treatment.
      --Medical care services which are integrated with essential support
            services, such as: child care, mental health and case
            management, and integrated with research in new treatments.
      --Specialized space and programs for adolescents, people with
            chemical dependency and for women, children and families with
            HIV.
      --A resource center library and classrooms to enhance the
            effectiveness of prevention and education programs.
    Research:
        Recent breakthroughs in drug therapies give reason to be hopeful
    for the successful treatment of HIV/AIDS now and in the future. The
    Center will carry out critical research to continue the search for a
    cure, as well as develop new treatments that will help prolong the
    comfortable and functional lives of HIV/AIDS patients.
    Resource and Referral Site:
        The CORE Center will serve as a resource and referral center for
    the growing network of primary care providers currently delivering
    community-based care for people with infectious diseases. It will
    provide increased access to the sophisticated medical services of
    institutions like Cook County Hospital and Rush-Presbyterian-St. Luke's
    Medical Center. The Center will supplement services available through
    the providers in the community-based system, enabling them to serve
    clients more efficiently and effectively and avoiding costly
    duplication of services. Community providers will now be able to refer
    patients to the Center for a definitive diagnosis, specialized care or
    participation in clinical trials. Patients can then return to their own
    primary care provider or clinics for continuing care.
    Cook County Hospital and Rush-Presbyterian-St. Luke's Medical Center: A
            Tradition of Excellence:
        As leaders in HIV/AIDS research and model service delivery, Cook
    County Hospital and Rush-Presbyterian-St. Luke's Health Center are
    highly capable of delivering programs of highest quality care and are
    uniquely qualified to develop and operate the Center in response to
    this urgent, community identified, health crisis.
        Each institution has in-depth experience with infectious diseases,
    especially HIV/AIDS, and a history of successful affiliation with one
    another. They are Illinois' largest public and private hospitals.
    Traditionally, Cook County Hospital has cared for approximately 30
    percent of the HIV population receiving care in the Chicago area and
    has an international reputation for HIV model care programs, prevention
    and research. The Infectious Disease Section at Rush has been
    nationally recognized for its HIV treatment program since it was
    created in 1986. Rush, a leader in clinical HIV related research also
    coordinates an acclaimed service of national physician training
    sessions on HIV/AIDS. In addition, the two hospitals are already
    integrated for the provision of training and clinical care.
        It is these existing strengths and collaborations that will enable
    The CORE Center to provide the most comprehensive and expert care
    available in the country.
    A National Prototype:
        This unique partnership and model system of care will be a
    prototype for national efforts to meet the challenges posed by
    infectious diseases, especially, HIV/AIDS.
        It is estimated that in its first full year of operation, operating
    and programmatic costs will be approximately $14.5 million.
        In light of the Subcommittees support for community-based solutions
    to unique public health problems, and the current public health crisis
    in Chicago, we are requesting that you include $2 million for the
    operational and programmatic support of The CORE Center in the fiscal
    year 1998 Labor, Health and Human Services and Education Appropriations
    Bill.
        Thank you Mr. Chairman for your consideration of our request.
                                     ______

      Prepared Statement of Spencer Foreman, M.D., President, Montefiore
                                 Medical Center
        Mr. Chairman and Members of the subcommittee, thank you for the
    opportunity to submit this testimony for the record on the Montefiore
    Medical Center in the Bronx, New York and the exciting new Bronx Health
    Initiative that we are undertaking.
    The Bronx
         The Bronx has a population of 1.2 million residents, placing it
    among the top 10 largest ``cities'' in the United States. Approximately
    400,000 of those residents are children. Neighborhoods in the Bronx
    rank among the poorest in the nation--30 percent of residents in the
    Bronx are on some form of public assistance and/or Medicaid (31
    percent). Over one-quarter of the residents have incomes under $10,000
    annually and 60 percent have incomes below $30,000 annually.
        The Bronx population is largely composed of historically
    underserved and uninsured minorities with 28 percent African American
    and 50 percent Hispanic persons. Three-quarters of the Bronx population
    is non-white. The Bronx is among the nations most underserved urban
    areas with sociodemographic and health status indicators which
    underscore its need for health services. Those health and social
    indicators include:
      --The infant mortality rate of 12:1 is among one the nation's highest
            ratios;
      --The rates of teenage pregnancy and low birth weights are higher
            than the proportions for the city and nation;
      --The incidence of Asthma is six times greater than the national
            average; and
      --The lack of industry and strong economic base leaves the borough
            with extreme housing problems, drug abuse and crime--all
            underlying problems of poverty and unemployment.
    Montefiore Medical Center
        Established over 100 years ago as a chronic care hospital,
    Montefiore has become a critical resource in addressing the health and
    social needs of the residents of the Bronx. Today, the Montefiore
    Medical Center system is a four hospital, 2,326 bed system with two
    skilled nursing facilities, a home health agency, nine community based
    primary care centers and a range of other outreach services operating
    in the Bronx and surrounding communities. This public/private health
    system provides more than one-third of all inpatient acute care, over
    42 percent of all tertiary care, and $50 million in uncompensated care
    annually.
        Montefiore Medical Center was the first hospital to create a
    community-oriented care program in the late 1960's and early 1970's to
    meet the needs of underserved residents in the Bronx. MMC has
    traditionally been a critical element in successfully addressing the
    social health and physical well-being of the those residents.
        The Medical Center strives for excellence in patient care, medical
    education, scientific research and community services. Staff and
    faculty at MMC, practice ``family-centered care'' working with families
    to promote health, prevent diseases, and alleviate the burden of
    illness.
        In 1995, Montefiore Medical Center performed an extensive review of
    the health of their population, specifically children. The study
    revealed that children in the Bronx are among the city's most needy
    with rates of low birth weight infant mortality, HIV infections and
    other reportable diseases which rank among the cities most
    disadvantages. It also revealed that hospitalization rates for children
    (0-19 years) in the Bronx are excessive at 65 admissions for every
    1,000 persons--nearly twice the average of more affluent areas.
        The study also demonstrated that child health programs at MMC are
    at great risk for the future. While MMC offers a comprehensive array of
    child health, prevention and education services through a network of
    inpatient, outpatient, and community programs and facilities, these
    programs are fragmented and uncoordinated. The four-site program is
    hard to sustain, and utilization declines (due to managed care)
    threaten the viability of the system. It was determined that many
    inadequacies exist due to the limitations of the physical environment.
    Existing programs and services at MMC lack focus for the specific needs
    of children and lack child and family-friendly elements. Among the four
    hospitals, inpatient services for children are inadequate and
    fragmented. Ambulatory services for children are scattered throughout
    the system and not well housed and primary and specialty ambulatory
    care are not adequately articulated to meet the health and related
    needs of children. In addition, there are no existing ancillary
    services specifically designed for children. Finally, the fragmented
    nature of existing children's services makes it increasingly difficult
    to staff the four-site program. Rather than having a critical mass of
    pediatric primary and specialty care in one location, this expertise is
    dispersed throughout the multi-site system making departmental
    cooperation and consultation difficult and staff retention very
    challenging.
        It is clear that a restructuring and consolidation of services for
    children at MMC must take place to ensure the livelihood of the
    hospital as well as the longevity of children's health services in the
    Bronx.
        In response to this crisis--Montefiore has established the ``Bronx
    Health Initiative.'' We have undertaken the daunting task of
    consolidating all of our children's services into a central location--a
    new Children's Medical Center. The new Children's Hospital will serve
    as ``hub'' of the new ``Bronx Health Initiative''--eliminating
    fragmentation within the existing child health network, enabling the
    provision of services in a more direct, cost-effective manner and
    enabling MMC to better and more efficiently address the ever growing
    health needs of the children in the Bronx.
    The Bronx Health Initiative
        The traditional model of children's hospitals are designed for and
    focus on chronic care. There has been very little preventive,
    supportive or specialty care at children's hospitals. With the more
    sophisticated understanding of childhood illness, the resulting need
    for advanced care, and with the increased understanding of the
    connection between an individuals health status and his/her lifestyle
    and family life--a new model of children's hospitals has emerged.
        The Bronx Health Initiative at MMC, comprised of both the child
    health services within the existing Ambulatory Care Network and the
    planned Children's Medical Center, is a unique example of a modern and
    aggressive approach to the provision of comprehensive children's
    primary and specialized health care services.
        The Bronx Health Initiative proposes a unique model of care which
    will assure MMC's continued leadership in the provision of health care
    and related services to children in the Bronx and surrounding areas.
    That proposal includes:
      --A New Philosophy of Family Centered Care: At Montefiore Medical
            Center we believe that the well-being of children is dependent
            upon the understanding and participation of the family. We
            promote a respectful, collaborative partnership with the
            families of our patients, relying on their expertise as the
            primary source of strength and support for their children. We
            work with families in designing individual health care and
            general services, facilities, research, and medical education,
            respecting their needs, beliefs, culture, values, and
            knowledge. We value families as central to a child's health and
            are committed to supporting them in this vital role.
      --A Child Health Network: The establishment of a child health
            network, which builds on the existing services available
            through the Ambulatory Care Network, is a necessity in the
            rapidly changing environment in the Bronx. The Bronx Health
            Initiative will ensure that a Child Health Network provides
            each child with: access to high quality primary and specialty
            care; effective connections and communication between existing
            primary and specialty care services/providers; cohesion among
            the different parts of the network to ensure a full continuum
            of child health and related services; access to the secondary
            and tertiary services at the Children's Medical Center so that
            children and families will have the option of receiving care in
            an organized, cost effective and accountable system of care.
        The Bronx Health Initiative will provide the consolidation and
    coordination necessary to effectively and efficiently provide a full
    continuum of care for the children and families of the Bronx.
        The network aspects of the Bronx Health Initiative will play a key
    role in ensuring that a full continuum is and remains available for
    children and their families through the existing impressive array of
    services throughout the Bronx, including:
      --3 hospital outpatient departments, providing primary and specialty
            care and special programs for children;
      --30 ambulatory care sites--receiving over 300,000 visits annually;
      -- 21 school based health clinics--providing services to over 11,000
            children annually;
      --The New York Children's Initiative--an innovative outreach care
            programs for homeless children providing care to over 6,300
            children annually;
      --An extensive base of privately practicing pediatricians throughout
            the Bronx and Westchester.
        The ``front door'' to the planned Children's Medical Center, the
    core of the Bronx Health Initiative, is through any one of the
    affiliated ambulatory care sites in our network. Within the network
    each child will have an identifiable primary care provider responsible
    for their continuum of care. Any site in the system will have the
    ability to assess the need for specialty services and to provide those
    services and consultations on-site or through referral. There will be
    constant communication between the primary care providers in the
    community and the specialty care providers at the Children's Medical
    Center or in the community.
        The network currently offers specialty services specifically geared
    to meet the special health and social service needs of children in the
    community. It is critical to note that these programs do not simply
    target health needs. They target some of the underlying economic and
    social issues that cause illness in children by providing prevention
    and education services for at-risk youth and families in the Bronx.
    Those existing special services include:
      --Child Abuse Center;
      --Pediatric Resource Center;
      --Child Health and Safety Initiative;
      --Ambulatory care to adolescents with HIV infection;
      --Breast Cancer Screening, Outreach and Education;
      --A nationally recognized mobile lead screening and safe house
            program;
      --School based health program providing direct medical services at 21
            schools in the community;
      --A drop out prevention program;
      --Outreach to and prenatal/child care services to pregnant women who
            are either HIV infected or at-risk for infection; and
      --Community redevelopment/commercial revitalization.
    A New Children's Hospital
        The planned Children's Hospital will provide the critical
    connection between the providers of children's health services in the
    Ambulatory Care Network. It will serve as the ``hub'' of the entire
    Bronx Health Initiative.
        The new hospital will not stand alone but will be connected to a
    tertiary care center. The hospital will be programmed and staffed
    specifically with the special needs of children and families in mind.
    Those special features and services include:
      --State-of-the-art pediatric emergency room;
      --Medical and surgical subspecialty ambulatory clinical modules
            designed specifically for children;
      --A short stay ``Day Hospital;''
      --Family support services;
      --Diagnostic and treatment services;
      --Age appropriate units specifically designed to care for the
            individual needs of infants, school age children, and
            adolescents.
      --A State-of-the-art Pediatric Critical Care Unit designed with
            adequate space for parents to stay with their child with
            specialized activities such as dialysis and transplant
            technologies;
      --All single occupancy rooms will have parent sleep-in
            accommodations;
      --A playroom on each unit with age appropriate toys, staffed with
            child life professionals to assist in the developmental needs
            of children;
      --School facilities are available and specially designed to meet the
            needs of each age group;
      --Liaison child psychiatry services; and
      --Medical information stations on each unit.
        The implementation of the Bronx Health Initiative will elevate the
    quality and scope of primary and specialty health care services to
    children and their families in the Bronx.
        Montefiore Medical Center, with our 100 year tradition of community
    service and community-based health care programs, is uniquely qualified
    to implement and operate the Bronx Health Initiative which could serve
    as a national model of how complete health systems can adapt to and
    address the very unique health and social needs of today's inner-city,
    minority, children.
        Montefiore Medical Center looks forward to developing relationships
    with the federal government to make this plan a reality and to serve as
    a model to other cities and hospital systems.
                                     ______

      Prepared Statement of the American Society of Clinical Pathologists
        Chairman Specter, members of the subcommittee, my name is Colleen
    Mortensen, MT(ASCP). I am a medical technologist at the Great Plains
    Regional Medical Center in North Platte, Nebraska, and a graduate of a
    medical technology program funded by Title VII Allied Health Project
    Grants.
        I hope you will indulge me while I explain my story. As a native of
    the city of Omaha, I went to school at Creighton University in 1971,
    but did not complete my degree because both of my parents suddenly
    died. Fortunately, I met a wonderful man and we had four children--
    three boys and a girl. My husband is a fourth generation farmer and
    rancher in Curtis, Nebraska. In case you are not familiar with the
    territory--we are six hours from Omaha, where the University of
    Nebraska Medical Center is located, 90 miles from Kearney, where the
    nearest university is located, we travel 30 miles on dirt roads to get
    to North Platte, which is where I work, and we are two miles from our
    nearest neighbor. During a major snowstorm, it took 17 days to have the
    power company come out to us to restore our electricity. Mind you, I'm
    not complaining, I love living in rural America.
        Once my children were in school, I wanted to continue my education,
    and complete my bachelor's degree. While at Creighton University, I had
    studied medical technology, but traveling to Omaha, where the only
    classes in this discipline were held, was not even a remote
    possibility. Then, I heard about a special University of Nebraska
    Medical Center program that would be offered in rural Nebraska.
        This new program, which was awarded start-up funds by the Title VII
    Allied Health Project Grants program, established a student laboratory
    in Kearney, where students receive their education through satellite
    lectures and curriculum from the University of Nebraska Medical Center
    in Omaha. I was accepted to the program at the age of 40, and drove the
    90 miles to Kearney for a year in order to continue my baccalaureate
    degree in medical technology. Then, because the Allied Health Project
    Grants program encouraged students to remain in the rural area, the
    rest of my clinical laboratory education and training was set up close
    to home in North Platte.
        North Platte is a town of 25,000 people that has had difficulty
    finding qualified individuals to work in the hospital laboratory. The
    medical center there provides service to people in Nebraska, Wyoming,
    and Kansas, and the laboratory personnel often travel in small planes
    to reach outlying clients. I am pleased to tell you that I am now a
    professional, nationally certified medical technologist working at the
    Great Plains Regional Medical Center in North Platte. In my spare time,
    I work at the local nursing home, where I can draw blood for the
    elderly patients. In the past, these patients had not been able to have
    blood drawn on a consistent basis, since a trained individual had not
    always been available.
        According to Linda Fell, MS, MT(ASCP)SH, Education Coordinator with
    the Division of Medical Technology at the University of Nebraska
    Medical Center in Omaha, with the $358,000 awarded in 1992 to the
    University of Nebraska Medical Center Division of Medical Technology
    from the Allied Health Project Grants program, 45 students graduated
    from the rural education program. Of these, 93 percent are working in
    rural communities. Because of the initial funds from the allied health
    grant, the success of the program has increased over the years. Our
    rural education program in Nebraska is now self-sufficient, and this
    program has increased its percent of graduates accepting jobs in rural
    areas from 8 percent prior to the grant to 50 percent in 1996.
        The Allied Health Project Grants program, under section 767, Title
    VII of the Public Health Service Act, has been effective in addressing
    the training and educational needs of allied health personnel, but
    further strides in funding are still needed to increase the number of
    allied health professionals to an adequate level. This shortage is
    clearly illustrated by the current vacancy rates of some of the allied
    health professions. Histologic technicians, who prepare tissue
    specimens, have a vacancy rate of 11.7 percent. Cytotechnologist
    supervisors, who are responsible for examining cells for signs of
    cancer, have a vacancy rate of 14.1 percent.
        Eliminating shortages in rural areas are but one focus of the
    grants. Meeting the national goal of creating a successful minority
    recruiting and retention program for medical technologists is another
    one. This was the focus of a University of Maryland project initiated
    by allied health grant funding in 1991. Through utilizing a four phase
    design, which begins with career awareness activities for elementary
    and middle school students, this model provides a continuum of
    activities which progressively focuses on identifying, retaining, and
    advancing interested students to the completion of a baccalaureate
    degree. Because of this program, the University of Maryland has
    attained a current 52 percent minority medical technology student
    enrollment at a majority institution, and an average 95 percent student
    retention rate, placing it among the highest in the country.
        The field of allied health represents over 200 distinct health care
    specialties and encompasses 60 percent of the nation's health care
    workforce. Allied health professionals are an invaluable asset to the
    nation's public health. Allied health professionals are represented in
    almost every tier of America's health care delivery system including
    hospitals, clinical laboratories, hospices, extended care facilities,
    health maintenance organizations, physicians' offices, and schools.
        In light of the success of these programs, and the continuing need
    for additional allied health professionals in our nation's health care
    delivery system, we urge you to consider funding the Allied Health
    Project Grants program at $10 million for fiscal year 1998.
        Thank you for your kind consideration.
                                     ______

        Prepared Statement of the National Energy Assistance Directors'
                                  Association
        The National Energy Assistance Directors' Association (NEADA) is
    pleased to submit this statement to the Senate Subcommittee on Labor,
    Health and Human Services, and Education as it considers fiscal year
    1998 appropriations for the Low-Income Home Energy Assistance Program
    (LIHEAP). NEADA is the primary educational and policy organization for
    the state LIHEAP directors. NEADA also works closely with the National
    Association of State Community Service Programs (representing the state
    weatherization program offices) and the National Association of State
    Energy Officials (representing the state energy offices) to more
    effectively share ideas on the delivery of state energy services
    through a new Energy Programs Consortium.
        The members of NEADA urge the Subcommittee to consider providing a
    program funding level of $1.3 billion for fiscal year 1998 and advance
    funding of $1.3 billion for fiscal year 1999. The higher funding level
    would be used to restore LIHEAP services to the estimated 1.1 million
    low-income elderly, disabled and working poor households that lost
    program benefits as a result of funding reductions enacted in fiscal
    year 1996 and to restore benefit levels to the remaining 4.6 million
    households that are current recipients of program benefits.
        The funding decreases mandated since fiscal year 1996 have forced
    the states to tighten eligibility standards and, in some cases, reduce
    benefit levels. On the basis of information we have today, the number
    of recipients has been cut by more than one million households during
    the same time period, while average benefits have declined by about 10
    percent. Prior to the dramatic reduction in fiscal year 1996, LIHEAP
    was serving 20 percent of the eligible population (15 million
    individuals in those households), with one-half of the recipients as
    elderly or disabled Americans living on fixed incomes, and one-quarter
    were the working poor.
        LIHEAP provides heating and cooling assistance to close to an
    estimated 4.6 million households in the United States. All users of
    fuels are eligible for assistance, with the primary fuels being natural
    gas, heating oil, electricity, and propane. Recipient households are
    poor; the majority earn an income of less than $8,000 per year. The
    energy burden for these households is extremely high, averaging
    approximately 15 percent of household income, approximately four times
    the rate for all households. Program recipients include the working
    poor. For many of these families, earned income is not sufficient to
    pay high winter heating or summer cooling bills.
        In short, LIHEAP is very successful in helping low-income
    households pay their energy bills, thereby preventing fuel supply shut-
    offs. The alternative to program assistance is unfortunately clear--
    families would have to choose between paying their home energy bill and
    purchasing other necessities of daily living, such as food, medicine,
    and rent.
        The LIHEAP statute provides states with considerable flexibility in
    administering the program to deliver services effectively at the lowest
    possible costs. The program is highly targeted and has been successful
    in helping needy populations. LIHEAP has also served as a successful
    bridge in helping many families through difficult periods, while
    keeping them off long-term assistance. About half of the states rely on
    local community action agencies to provide outreach and counseling;
    others use local government agencies and state welfare offices. The net
    result is that program services are delivered for about $25 per
    household.
        States have been taking steps to leverage LIHEAP funds by actively
    supporting partnerships with utilities and other fuel providers.
    Programs include utility rate discounts, arrearage forgiveness, and
    state supplemental aid. In addition, states have encouraged utilities
    to establish fuel funds, allowing individuals to contribute funds to
    help poor families meet their home energy expenses.
        Innovative programs have been developed across the states which
    have stretched the funds further. Some of these programs are noted
    below. Co-pay programs, as noted above, permit clients to enroll for 6-
    12 month periods and attend budget counseling sessions, energy
    efficiency training, and other programs that help clients become self-
    sufficient. Alaska developed a mail-in outreach/application process to
    help keep administrative costs low to deal with the dispersed needy
    population.
        Comprehensive case management has been applied in Arizona,
    including necessary follow-up. Colorado has developed a crisis
    intervention program to remedy non-fuel emergencies, such as
    malfunctioning furnaces and broken windows to avoid needless waste of
    scarce fuel assistance funds. Assistance is provided in Kansas if
    recipients can actively demonstrate a regular payment history. Rhode
    Island has developed a prototypical percentage-of-income payment plan
    (PIPP), which requires co-payments and arrearage forgiveness, and
    enhances client self-sufficiency. In Wisconsin, the state has developed
    a program to identify residents in greatest need by identifying problem
    households in coordination with local providers.
        Funding for supplemental program activities has leveled-off in
    recent years, and further increases are not likely. Rather, it is
    highly likely that as a result of electric utility restructuring,
    supplemental funding will decline, thereby increasing the burden on
    low-income households. The Energy Policy Act of 1992, led to more
    direct competition between traditional franchised utilities and new
    market entrants that supply generation without countervailing
    responsibilities to support ``public benefit'' programs, such as
    LIHEAP. This Congressional action led to the issuance of Orders 888 and
    889 by the Federal Energy Regulatory Commission, which accelerated the
    process. Thus far, residential consumers have not been the big
    beneficiaries of this process. Commitments to all types of ``public
    benefit'' programs by utilities, such as LIHEAP-type activities, energy
    efficiency, energy research and renewable energy programs, has dropped
    dramatically since 1994.
        Additionally, during the past five years, there has been an
    increase in price volatility for heating oil, propane, natural gas and
    other products. For example, this past winter dramatic seasonal price
    spikes occurred in many of these fuels, attributable in large part to
    low inventory levels. At the onset of the winter season, primary
    inventories of heating oil were at the lowest levels recorded since the
    Department of Energy's Energy Information Administration (EIA) began
    systematic recordkeeping in the 1970s. Up to 40 percent of low-income
    energy consumers are not served by electric and gas utilities for
    LIHEAP purposes; these fuels include heating oil, propane and kerosene.
        This industry-wide policy of ``just-in-time'' inventories, also
    known as ``keep inventories low and lean'' (KILL), especially for
    petroleum products, has had highly negative effects on low-income
    consumers who generally do not have the disposable income to purchase
    fuels off-season at lower costs. Thus, while energy prices have
    remained fairly stable on an annualized basis, the seasonal price
    spikes have severely affected the poor.
        The increase in price volatility has been coupled with real
    reductions in LIHEAP appropriations since the peak of $2.1 billion in
    fiscal year 1985, and further reductions in fiscal year 1996. Thus, the
    funding of $1 billion in fiscal year 1997, with $300 million in
    emergency funds, has resulted in dramatic reductions in services to the
    needy populations including the poor, elderly, disabled, working poor
    and those seeking a one-time bridge to prevent longer-term dependency.
    The fiscal year 1985 funding level would be more than $3 billion today,
    if inflation was taken into account.
        Additionally, some have suggested that LIHEAP is just a heating
    program. Cooling programs are critical throughout the country. Many of
    the states with cooling programs have been highly successful in
    targeting needy populations and preventing serious illness or death.
    The gravity of that situation cannot be ignored. The situation a few
    summers ago in Chicago, where deaths numbered in the hundreds, provides
    an example of why cooling programs are needed through LIHEAP.
        LIHEAP also works in partnership with the Weatherization Assistance
    Program. By law, states are allowed to use up to 15 percent of LIHEAP
    funds to help families reduce energy costs by upgrading heating
    systems, and applying window treatments, insulation, caulking, storm
    windows and doors and other energy efficiency measures. The effect of
    this partnership is to reduce the long-term need for assistance by
    reducing the need for energy.
        NEADA is pleased to have had the opportunity to share its views
    with the Subcommittee and stands ready to provide any additional
    information about the importance of LIHEAP in meeting the home heating
    and cooling needs of the nation's low-income, disabled, and elderly
    residents.
                                     ______

    Prepared Statement of George A. Zitnay, Ph.D., President and CEO, Brain
                            Injury Association, Inc.
        Dear Mr. Chairman and Members of the Senate Appropriations
    Subcommittee on Labor, Health and Human Services, Education and Related
    Agencies:
        Thank you for allowing me the opportunity to submit testimony on
    behalf of the Brain Injury Association, Inc. for the record. My name is
    George A. Zitnay, Ph.D., and I am the President and Chief Executive
    Officer of the Brain Injury Association. My testimony focuses on the
    implementation of the Traumatic Brain Injury Act of 1996 and the need
    for $8 million in fiscal year 1998, to accomplish this goal.
        Below is background information on brain injury, the Brain Injury
    Association, and the importance of funding the Traumatic Brain Injury
    Act:
                                  brain injury
        Traumatic brain injury (TBI) is defined as an insult to the brain,
    not of a degenerative or congenital nature but caused by an external
    physical force, that may produce a diminished or altered state of
    consciousness, which results in an impairment of cognitive abilities or
    physical functioning. It can also result in the disturbance of
    behavioral or emotional functioning.
        Traumatic brain injury has become the number one killer and cause
    of disability of young people in the United States. Motor vehicle
    crashes, sports injuries, falls, and violence are the major causes of
    traumatic brain injury. Long known as the silent epidemic, TBI can
    strike anyone--infant, youth or elderly person--without warning, and
    often with devastating consequences. Traumatic brain injury affects the
    whole family and often results in huge medical and rehabilitation
    expenses over a lifetime.
        An estimated 1.9 million Americans experience traumatic brain
    injuries each year. About half of the these cases result in at least
    short-term disability, and 52,000 people die as a result of their
    injuries. The costs of TBI in the United States is estimated at more
    than $48 billion annually. Every year over 90,000 people sustain severe
    brain injuries leading to debilitating loss of function.
                          the brain injury association
        The Brain Injury Association, is a national, non-profit advocacy
    organization dedicated to improving the quality of life of persons with
    brain injury, as well as promoting research, education and prevention
    of brain injuries. It is composed of individuals with traumatic brain
    injury, their families, and the professionals who serve them. What
    began as a small group in a mother's kitchen has blossomed into a
    national organization with 44 state associations, over 400 local
    support groups and thousands of individual members.
                     the traumatic brain injury act of 1996
        In July 1996, the Congress enacted ``The Traumatic Brain Injury
    Act,'' Public Law 104-166, ``to provide for the conduct of expanded
    studies and the establishment of innovative programs with respect to
    traumatic brain injury.'' As you know, under the law three federal
    agencies are charged with responsibility for implementing TBI programs.
    The Centers for Disease Control and Prevention (CDC) is responsible for
    activities related to reducing the incidence of traumatic brain injury,
    the Health Resources and Services Administration (HRSA), Maternal and
    Child Health Bureau (MCHB) is responsible for implementing the TBI
    State Demonstration Program, and the National Institutes for Health
    (NIH) has been delegated responsibility for conducting basic and
    applied research and a consensus conference.
    CDC Surveillance/Prevention
        The TBI Act authorizes CDC to use $3 million for each of fiscal
    years 1997-1999, to support studies in collaboration with State and
    local health-related agencies to: determine the incidence and
    prevalence of traumatic brain injury; and develop a uniform reporting
    system under which States report incidents of traumatic injury. Funds
    are to be used to identify common therapeutic interventions which are
    used for the rehabilitation of individuals with such injuries, and
    develop practice guidelines for the rehabilitation of traumatic brain
    injury at such time as appropriate scientific research becomes
    available.
        Approximately $2.6 million was appropriated for fiscal year 1997.
    Additional funding for fiscal year 1998 is necessary to meet the
    objectives of this portion of the TBI Act.
        On February 12, 1997, CDC published a notice in the Federal
    Register announcing the availability of funds ($1.55 million) for
    approximately eleven Traumatic Brain Injury Surveillance programs for
    fiscal year 1997.
        The Notice states that ``[d]espite the magnitude of the problem of
    TBI, surveillance systems in only a few U.S. jurisdictions are
    adequately monitoring its impact. In the past, most of the data on TBIs
    have been collected in: hospital based clinical case series;
    epidemiological studies restricted to particular times and locales;
    registries maintained by government agencies responsible for providing
    services for persons with these injuries; and state-based public health
    surveillance systems for TBI.''
        The Notice explains that these methods of data collection do not
    provide sufficient information to develop a multi-state surveillance
    system. Epidemiological studies frequently use incompatible case
    definitions and data sets, making comparison and aggregation of data
    impossible. Thus, these studies have not produced data to define
    patterns in TBI over time, to assess changes in such patterns, and to
    evaluate the effectiveness of current rehabilitation and prevention
    programs.
        The CDC National Center for Injury Prevention and Control (NCIPC)
    has defined TBI and published TBI surveillance methods and guidelines
    for public health purposes. Although NCIPC currently funds four states
    with developed TBI surveillance systems, expansion of this multi-state,
    uniform reporting system is needed to provide nationally representative
    data on groups at higher risk, causes and circumstances of injury, and
    outcomes of injury. These data are critical to plan, implement, and
    then evaluate programs for preventing TBI and preventing disabilities
    from occurring after TBI.
        Full funding to meet the goals of determining the incidence and
    prevalence of traumatic brain injury as established in the TBI Act
    would require $3 million for fiscal year 1998.
    HRSA/MCHB TBI Demonstration Grants Program
        Congress authorized HRSA/MCHB to establish a program of grants to
    States for the purpose of carrying out demonstration projects to
    improve health and other services for persons with traumatic brain
    injury.
        TBI Demonstration Grants are intended to help States implement
    state-wide systems that ensure access to comprehensive and coordinated
    TBI services. Under the Traumatic Brain Injury Act, these projects are
    to involve all relevant disciplines, organizations and consumers.
        In fiscal year 1997, three-fifths of the funds authorized for this
    program were appropriated. The Brain Injury Association urges the
    Committee to fully fund this program at the $5 million level in fiscal
    year 1998.
    State Planning Grants
        During 1997, HRSA will make planning grants available to those
    States that may need assistance in establishing the necessary
    infrastructure core capacity components before developing an
    implementation plan. Four core capacity components have been identified
    as the essential elements in any plan for state implementation of TBI
    services. These grantees will have the opportunity to develop the
    following:
      --A Statewide TBI Advisory Board;
      --A designated State agency and staff position responsible for State
            TBI activities;
      --A Statewide needs assessment, to address the full spectrum of care
            and services from initial acute treatment through community
            reintegration for individuals with TBI; and
      --A Statewide action plan to develop a comprehensive, community-based
            system of care that encompasses physical, psychological,
            educational, vocational, and social aspects of TBI services and
            addresses the needs of the family as well as the TBI survivor.
    State Implementation Grants
        HRSA will make State implementation grants to help each State move
    toward a statewide system that assures access to comprehensive and
    coordinated services for individuals with TBI. The following are
    priorities within the program:
      --Interagency collaboration and linkages;
      --Education and training programs for survivors, families, and/or
            professionals;
      --Data collection to track programs, resources, and enhance program
            evaluation;
      --Development of materials to meet the needs of low literacy and
            culturally or ethnically distinct populations;
      --Development of a pre-discharge model to be used in acute care sites
            in the development of long term resource plans for TBI
            survivors; and
      --Development of a model to coordinate financial resources to provide
            services that most effectively meet the needs of TBI survivors.
        An unusual and important aspect of this program is that in order to
    receive a grant, States must make available, in cash, non-Federal
    contributions toward the costs of their programs in an amount that is
    not less than $1 for each $2 of Federal funds provided under the grant.
    Therefore, States applying for such grants would clearly have an
    interest at stake and would have already made a serious commitment to
    establishing their TBI system.
        The MCHB is moving forward with this program, and the Brain Injury
    Association has reason to expect that many states will apply for both
    the planning and implementing grants. Already, MCHB has issued a
    ``Notice of Availability of Funds'' (for fiscal year 1997) on March 27,
    1997 in the Federal Register. The ``Notice'' states that the agency is
    ``committed to achieving the health promotion and disease prevention
    objectives of Healthy People 2000 * * * [and] the TBI grant program
    will directly address the Healthy People 2000 objectives related to
    chronic disabling conditions, particularly in relation to service
    system expansion and objectives related to secondary injury
    prevention.''
        Applications for grants are due by May 29, 1997. It is the Brain
    Injury Association's understanding that many more States will be
    applying than the funding can accommodate.
        Although the TBI Act authorizes $5 million for this program for
    three consecutive years (fiscal year 1997-fiscal year 1999), only $2.87
    million was appropriated for fiscal year 1997. It is critical to
    provide means to maintain continuity of these projects initiated in
    fiscal year 1997, that the two subsequent years (fiscal year 1998 and
    fiscal year 1999) be fully funded. An appropriation of $5 million in
    fiscal year 1998, is critical to assisting States to better care for
    their citizens with brain injury.
    NIH Consensus Conference
        The National Center for Medical Rehabilitation Research within the
    National Institute for Child Health and Human Development at the
    National Institutes of Health, is to conduct a national consensus
    conference on managing traumatic brain injury and related
    rehabilitation concerns.
        Already a work plan has been put together by the Agency for Health
    Care Policy and Research (AHCPR) and preliminary meetings have been
    held between AHCPR, NIH and the Brain Injury Association. AHCPR is to
    assist by reviewing and synthesizing the existing scientific evidence
    on the common therapeutic interventions for the treatment of traumatic
    brain injury as specified in the TBI Act. The AHCPR developed evidence
    review is to serve as the foundation for the development of consensus
    recommendations by the NIH panel. The next planning meeting to discuss
    the consensus conference is scheduled to be held later this month. It
    is the Brain Injury Association's understanding that the $500,000 that
    was authorized, was appropriated to the National Institutes of Health's
    budget for the purpose of this conference.
        Thank you for your continued support for these important programs.
    I appreciate your time and attention in assuring that they are fully
    funded.
                                     ______

             Prepared Statement of the American Nurses Association
        The American Nurses Association (ANA), joined by the Emergency
    Nurses Association, appreciates this opportunity to comment on fiscal
    year 1998 appropriations for nursing education, nursing research and
    workforce programs.
        ANA is the only full-service professional organization representing
    the nation's 2.5 million registered nurses, including staff nurses,
    nurse practitioners, clinical nurse specialists, certified nurse
    midwives and certified registered nurse anesthetists through its 53
    state and territorial nurses association.
        The Emergency Nurses Association is a voluntary national membership
    association of over 24,000 professional nurses committed to the
    excellence of emergency care.
        We gratefully acknowledge this Subcommittee's support for nursing
    education and research. You have continued to recognize the importance
    of nurses in health care delivery and have funded programs for nursing
    education and innovative practice models. We recognize that you will
    continue to make difficult choices in this year's appropriations
    recommendations especially in light of the Administration's fiscal year
    1998 Budget proposal which decimates funding for nursing education
    programs. Although the nursing community at large is appalled and
    outraged with the Administration's proposal, we believe that our shared
    mutual goal of ensuring the nation of an adequate supply of well-
    educated nurses, to meet the increasing demands of our rapidly changing
    health care system, will reaffirm the need for continued funding of
    these programs. Today, we offer our professional recommendations for
    federal funding of nursing education, nursing research and workforce
    programs.
      department of health and human services programs nurse education act
        More than 100,000 advanced practice nurses--registered nurses with
    education and clinical experience generally at a master's degree
    level--are providing primary care in the place of physicians or are
    providing an expanded type of primary care, either as nurse
    practitioners, certified nurse midwives or clinical nurse specialists.
    Due to unprecedented changes in our health care delivery system and the
    changing demographics and complexity of care, nurse practitioners will
    be in increasing demand and the nurse education system will be
    stretched to provide first-quality training for them. These changes
    call for the fullest utilization possible of the multi-disciplinary
    providers who care for patients and families in an ever-increasing
    array of settings: hospitals, subacute care facilities, rehabilitation
    facilities, long term care facilities, schools and universities,
    workplaces and communities.
        Federal support for nursing education in Title VIII of the Public
    Health Service Act (PHSA) is unduplicated and essential to achieve
    future goals for the public's health. Under current law, specific
    authorizations are made for nurse practitioners/nurse midwives;
    professional nurse traineeships; nursing special projects; advanced
    nurse education; nurse anesthetists; and disadvantaged assistance.
    Although the Nurse Education Act was not reauthorized during the 104th
    Congress, a proposal was developed which would give the Secretary of
    Health and Human Services broad discretion to determine which projects
    to fund, with priority given to projects which would substantially
    benefit rural or underserved populations, including public health
    departments. In this proposal, the Division of Nursing would have the
    needed flexibility to focus on curriculum development and other
    programs to help change the focus of nurse education from acute care
    settings to the preparation of more nurses who are able to function
    where there is a greater demand. It would also better address the need
    for increasing the numbers of minority nurses available to provide
    culturally competent, linguistically appropriate health care services
    to underserved communities. These nurses would be better prepared to
    assist these populations in changing the way they access our health
    care system, and in helping these patients understand the advantages of
    developing relationships with primary providers. By itself, the
    behavior change from accessing health care services through emergency
    departments to one in which the consumer routinely seeks care through a
    primary provider decreases health care costs exponentially.
        As work on a reauthorization proposal progresses, it is crucial
    that the Division of Nursing be able to continue the administration of
    nursing education programs at current funding levels until the new
    programs can be implemented. For fiscal year 1997, the Nurse Education
    Act was funded at $65.3 million. For fiscal year 1998, we are
    requesting level funding of $65.3 million for the programs funded under
    the Nurse Education Act. The following provides a brief description of
    these programs, along with the fiscal year 1998 individual funding
    recommendations.
    Nursing Special Projects (Section 820)
        Title VIII of the PHSA is the only specific source of funds for
    innovation in nursing practice. Examples of innovation include nurse
    managed clinics, fifty percent of which have been developed or expanded
    with Title VIII support. The dramatic shift in health care delivery
    systems from inpatient to outpatient settings further emphasizes the
    need for workforce retraining and the development of new programs to
    address this educational need. We recommend level funding at $10.6
    million.
    Nurse Practitioner and Certified Nurse-Midwife Program Grants (Section
            822)
        Advanced practice continues to hold the nation's greatest promise
    of providing primary care access in rural, inner-city and underserved
    areas of the country. Title VIII of the PHSA has provided support to
    more than 80 percent of the nurse midwifery programs in the U.S. and 60
    percent of the nurse practitioner programs in the country. We recommend
    level funding at $17.6 million.
    Nursing Education Opportunities for Individuals from Disadvantaged
            Backgrounds (Section 827)
        Over-utilization of costly emergency care, decreased access to
    primary care providers and a general lack of trust in the health care
    system has frequently been attributed to the lack of representation of
    minorities among health care providers. Funds from Title VIII of the
    PHSA have increased the number of minority nurses available to provide
    culturally competent, linguistically appropriate health care services
    to underserved communities. Evaluative studies have determined that
    this program has been the driving force behind many of the efforts
    nationwide to increase diversity in the nursing profession. We
    recommend level funding at $3.7 million.
     Traineeships for Advanced Education of Professional Nurses (Section
            830); Nurse Anesthetists (Section 831); and Advanced Nurse
            Education Program (Section 821)
        Nursing education at the graduate (master's and doctoral) level
    provides the skilled clinicians for promoting excellence in practice
    and the faculty needed to maintain the nursing education pipeline.
    Professional nurse traineeships under Title VIII of the PHSA support
    over 93 percent of all full-time graduate students in nursing.
    Preference is given for traineeship programs which provide significant
    learning experiences at rural health facilities and those where
    students come from health professional shortage areas. We recommend
    funding for Professional Nurse Traineeships at $15.9 million, Nurse
    Anesthetists program at $2.8 million and Advanced Nurse Education
    Programs at $12.5 million.
    Nurse Loan Repayment (Section 836)
        This program provides for up to 85 percent repayment of student
    loans for nurses who agree to a service payback in nursing shortage
    areas. We recommend funding at approximately $2.2 million.
    National Institute of Nursing Research (NINR)
        The second funding priority for nursing is funding for the NINR, on
    the campus of the National Institutes of Health (NIH). Again we applaud
    this Subcommittee's commitment to advancing behavioral science
    research. Nursing research is an integral part of the effectiveness of
    nursing care. The NINR provides the knowledge base for practice of 2.5
    million registered nurses. Advances in nursing care arising from
    nursing and other biomedical research improves the quality of patient
    care and has shown excellent progress in reducing health care costs and
    health care demands. The trend for earlier discharge from the hospital
    can potentially reduce hospital charges, but patients may and
    frequently require rehospitalization, increased acute care visits, and
    home care that families may be unable to provide. Research funded by
    NINR has shown that a model consisting of a carefully planned hospital
    early discharge program with follow-up care in the home by nurse
    specialists can result in improved recovery of patients at
    substantially reduced health care costs. The model was tested on three
    groups of women. Hospital costs were reduced by an average of 38
    percent for diabetic mothers and their babies; 29 percent for mothers
    with cesarean births and their babies; and 6 percent for women
    undergoing hysterectomies. Moreover, the women had fewer
    rehospitalizations and expressed greater satisfaction with their care.
    This model needs further testing in different patient populations.
    However, if its initial promise holds true for other groups of hospital
    patients, then earlier discharge with qualified home follow-up care can
    improve recovery and save increasingly scarce health care dollars. We
    support the Administration's proposed 2.6 percent increase above fiscal
    year 1997 funding which is $61 million for this program and would not
    oppose the NINR professional judgment recommendation of a 9 percent
    increase over the fiscal year 1997 level of $59.7 million.
    Substance Abuse and Mental Health Services Administration (SAMHSA)
            Clinical Training Program
        The SAMHSA Clinical Training Program has been a major source of the
    nation's mental health clinical training funds, and is a source of
    funding for ANA's Minority Fellowship Project (MFP). Since fiscal year
    1994 the program had been funded at $2.5 million. The funding is
    allocated through SAMHSA to the minority mental health training
    programs in Nursing, Psychology, Social Work and Psychiatry. The MFP
    graduates have an outstanding record of public service to minority and
    indigent communities.
        MFP graduates receive doctoral degrees and work as teachers in
    schools of nursing that serve minority students. They serve as role
    models and provide leadership to future nurses. As clinicians,
    graduates work in high risk urban and rural areas providing care to
    children and families who are victims of violence, HIV/AIDS, and
    substance abuse as well as the mentally ill. Nurses work in community
    based clinics and outreach programs and often are the primary care
    providers for indigent clients who might otherwise go without needed
    mental health services. In addition, these nurses generate research on
    minority mental health services, treatments and client outcomes.
    Culturally appropriate research helps us to identify ways to provide
    services faster and to more people, ultimately improving health care
    outcomes and reducing health care costs. This works to change the poor
    health outcomes and high risk health status that continues to plague
    minority communities. Unfortunately, last year this program was only
    funded at slightly above $1 million. We believe this program is a good
    investment in reducing mental health care costs and recommend funding
    of $2.5 million for fiscal year 1998 and a separate line item in the
    budget for the SAMHSA Clinical Training program to secure funding.
    Substance Abuse and Mental Health Services Administration (SAMHSA) AIDS
            Clinical Training Grant
        The SAMHSA AIDS Clinical Training grant is a small categorical
    program that provides funds for the training of mental health care
    providers to provide HIV related services to their patients and to
    address the complex psychologic, psychosocial and neuropsychiatric
    needs of people with HIV and their families and those at increased risk
    for HIV infection secondary to chronic mental illness. We recommend
    funding of $2.9 million for fiscal year 1998 for the SAMHSA AIDS
    Clinical Training Grant.
    AIDS Education and Training Centers (AETC)
        The AETC program in the Bureau of Health Professions at the Health
    Resources and Services Administration provides specialized training for
    health care personnel who care for patients with AIDS. Emerging and
    evolving scientific information with profound impact on individual and
    public health requires a ready network for information dissemination
    and technology transfer. AETC's reduce care costs, promote private
    sector voluntarism and ease the suffering of families and communities.
    It is for this reason that we recommend a funding level of $23 million
    for fiscal year 1998 for the AETC's.
    The National Institutes for Occupational Safety and Health (NIOSH)
        NIOSH is the only federal agency with the mission to conduct
    research and develop practical solutions to prevent work injury and
    illness. NIOSH played a key scientific role in the development of the
    bloodborne pathogens standard. This standard provides significant
    protection to front-line health care providers from possible exposure
    to bloodborne pathogens, such as HIV, Hepatitis-B and Hepatitis-C. In
    addition, NIOSH funds Educational Resource Centers. These multi-
    disciplinary, university based occupational health and safety training
    and research centers as the primary vehicle for the development and
    training of a corps of trained occupational health nurses and other
    safety professionals. We recommend fiscal year 1998 funding of $149
    million for NIOSH.
                    other workforce funding recommendations
        As an advocate for the economic and general welfare of registered
    nurses, the American Nurses Association also recommends appropriate
    funding for the Department of Labor and related agencies that serve to
    ensure a safe and fair workplace. ANA believes the work done by the
    Bureau of Labor Statistics, with respect to the ongoing collection and
    analysis of employment and economic data, is necessary for tracking
    changing economic conditions and essential to making workforce
    projections. We urge your support of the Bureau.
    National Labor Relations Board (NLRB)
        ANA is concerned about the ability of the NLRB to meet its
    statutory responsibility of enforcing and interpreting the National
    Labor Relations Act (NLRA). Current cutbacks have created delays in
    processing of complaints and holding representation elections thus
    jeopardizing the progress in employee and employer relations. ANA
    considers this a core independent agency function that must be
    preserved. We recommend fiscal year 1998 funding of $186 million for
    the NLRB.
    Occupational Safety and Health Administration (OSHA)
        The rapid restructuring of the health industry has increased and in
    some cases exacerbated the risk of exposure to illness and injury for
    nurses and other health care workers. Hospitals and HMOs are downsizing
    both to cut costs and be competitive in the health care marketplace.
    These economic pressures have led to a reduction in the number of
    registered nurses providing care at the bedside. The remaining nurses
    in these acute care settings have to work harder and take care of more
    and sicker patients than ever before. The nurses themselves are
    sustaining more frequent incidences of injury and illness. According to
    the Bureau of Labor Statistics, in 1993, back and shoulder injuries
    accounted for 50 percent of the 31,422 injuries and illnesses that kept
    registered nurses away from work. Overall, lifting was specified as the
    cause of 26 percent of all registered nurse injuries. ANA is concerned
    about these increased incidences and adamantly opposes any proposal
    which would prevent OSHA from developing an ergonomic regulation.
        Overall, there are an estimated 50,000 deaths per year that result
    from illnesses caused by workplace chemical exposures and six million
    nonfatal workplace injuries that occur annually. Budgetary reductions
    place OSHA at risk in meeting its statutory responsibility of
    establishing and enforcing national health and safety standards. ANA
    continues to be concerned about the strength of the Office of
    Occupational Health Nursing and its parity with similar offices.
    Occupational health nurses are the largest group of health care
    providers at the nation's work sites. As such, they are uniquely
    qualified to assess the practical realities of work sites and related
    regulatory activities. This office must be fully staffed in order to
    accomplish its critical task of linking the ongoing work of
    occupational safety and health nurses to OSHA. We recommend fiscal year
    1998 funding of $348 million for OSHA.
    Conclusion
        We appreciate the opportunity to comment on funding for nursing
    education, research and workforce programs. We thank you for your
    continued support and look forward to working with you as you proceed
    through the appropriations process.
                                     ______

               Prepared Statement of the Tri-Council for Nursing
        The Tri-Council for Nursing, a body comprised of 4 major national
    nursing organizations appreciates this opportunity to comment on fiscal
    year 1998 appropriations for nursing education, nursing research and
    workforce programs. The Tri-Council organizations are:
      --The American Nurses Association with 178,000 registered nurse
            members in 53 constituent state and territorial nurses
            associations;
      --The American Association of Colleges of Nursing representing over
            510 senior colleges and universities with baccalaureate,
            master's and doctoral nursing education programs across the
            United States;
      --The American Organization of Nurse Executives representing 5,500
            nurses in executive practice in 60 chapters nationwide; and
      --The National League for Nursing including 1,620 accredited nursing
            programs, 46 constituent state leagues, 104 health care
            institutions and 15,000 individual members, including
            consumers, faculty in schools of nursing and nurse
            practitioners in community nursing centers.
        These organizations are committed to ensuring a strong federal role
    for nursing education and nursing research. In the midst of
    unprecedented changes in our health care delivery system and the
    changing demographics and complexity of care, sound federal funding for
    nursing education programs, including advanced practice nurses and
    nursing research, has never been more critical. We appreciate the
    support this Subcommittee has shown for nursing education and research.
    Today, the Tri-Council offers its professional recommendations on key
    federal programs for nursing. A list of the specific recommendations is
    attached at the end of this testimony.
    Nurse Education Act
        Last year this committee took a hard look at the costs versus
    benefit of federal support for these programs and provided an increase
    in funding. This Subcommittee believed this was a good investment in
    our country's health care. It remains abundantly clear that there
    continues to be a lack of primary care providers to address the
    evolving health care needs of our citizens. Unfortunately, the
    President's fiscal year 1998 budget proposed a drastic cut in funding
    for these programs. We are appalled that the Administration could make
    such an irresponsible recommendation, especially in light of last
    year's overwhelming support and expressed need for primary care
    practitioners. This year as the movement towards a balanced budget
    proceeds, the Tri-Council realizes that budget constraints will force
    this Subcommittee to make difficult choices among domestic
    discretionary programs. We appreciate the support that this
    Subcommittee has consistently provided and look forward to continued
    support. For NEA programs, including advanced nurse education, nurse
    practitioners/nurse midwives, special projects, nurse disadvantaged
    assistance, professional nurse traineeships, nurse anesthetists and
    nurse loan repayment for shortage area service, the Tri-Council
    recommends a funding level of $65.3 million for fiscal year 1998.
        The funding provided through the NEA helped educate nurses
    throughout the country to meet the demands of an ever changing health
    care system and improve care to patients. Maintaining support for these
    vital education programs is of paramount importance, given the dramatic
    shifts occurring in the delivery of health care and the growing need
    for primary health care providers, especially in our nation's rural and
    inner city areas. Nurses play an essential role in meeting the health
    care needs of our citizens. In particular, advanced practice nurses
    (APNs) are uniquely qualified to meet the current shortages and the
    evolving needs. They can provide a majority of primary and preventive
    care services in a cost effective way and have continued to demonstrate
    a willingness to reach out to the elderly, disabled and children. The
    NEA plays an important role in preparing APNs.
        Section 822, provides grants to prepare nurse practitioners and
    certified nurse midwives to provide primary care in ambulatory care
    facilities, home care, outpatient and community-based settings. Nearly
    50 percent of the nurse practitioner program graduates are employed in
    inner city and rural areas and over 80 percent of current practicing
    nurse midwives devote a significant portion of their service to low-
    income or uninsured women. (Fiscal year 1996 supported 62 grants in the
    education of about 1,364 nurse practitioners and nurse midwives; the
    fiscal year 1997 appropriation should produce 69 awards).
        Stipends for graduate nursing students are provided through Section
    830. These students include clinical nurse specialists, nurse educators
    and public health nurses. Eighty percent of graduate-level nurses are
    in clinical practice, providing health care on a daily basis to our
    nation's citizens. The remaining twenty percent have roles in teaching
    and administration, where they prepare our nurses of the future and
    design the care delivery systems to meet the needs of our communities.
    The proportion of supported nurse graduates serving in medically
    underserved communities has increased by 36 percent in just the past
    two years. (The fiscal year 1996 funding provided support for the
    education of more than 4,013 nurses at 254 schools. The fiscal year
    1997 funding will support students at 264 schools.)
        Section 820, Special Projects, provides funding for expansion of
    enrollment in professional nursing programs, continuing education and
    primary care training. Special project funds have established and/or
    expanded over 50 percent of the currently operating nurse managed
    clinics providing care to high risk and vulnerable populations. All 28
    federally-funded clinics are in medically underserved areas. In fact
    these clinics provided nearly 32,000 primary care visits in elementary
    schools, senior citizens centers, colleges, housing complexes, homeless
    shelters, and other areas of need last year. Special Project funds have
    supported the development of nearly 100 percent of all the initial
    State and regional outreach models. These prototypes deliver
    undergraduate and/or graduate training through advanced audio/visual
    technology to nursing students who otherwise would not have had access
    to such training. These models have spurred private sector development
    of similar training programs. (Fiscal year 1996 appropriation funded 57
    special projects; fiscal year 1997 should fund about 62 projects.)
        Funding to prepare students at the master's and doctoral level for
    teaching, public health or other professional nursing specialities is
    provided in Section 821. For example, this funding supported over 50
    percent of the programs to train nurses to provide care in coronary
    care units, intensive care units, burn units, prisons, schools and in
    homeless settings. (Fiscal year 1996 funded 57 awards; fiscal year 1997
    should fund about 63 awards)
        Grants for traineeships and education projects for registered
    nurses to become certified registered nurse anesthetists (CRNA) are
    provided through Section 831. Also funded are grants to enable CRNA
    faculty to obtain relevant advanced education. Nurse anesthetists are
    the sole providers of anesthesia in 85 percent of rural area hospitals.
    (Fiscal year 1996 funded over 70 programs with 1108 students.)
        Section 827 assists schools and education programs in their
    recruitment of individuals from minority or disadvantaged backgrounds,
    and provides the students with nursing opportunities through training,
    counseling and modest stipends. Evaluative studies have determined that
    this program has been the driving force behind many of the efforts
    nationwide to increase diversity in the nursing profession. (The fiscal
    year 1996 appropriation provided support for 500 nursing students in 21
    programs; the fiscal year 1997 appropriation will fund about 23
    programs.)
        Funding to help students repay loans for their nursing education in
    exchange for service in areas of critical nursing shortage is derived
    through Section 846. Of the 185 awards made in fiscal year 1996, 53
    percent went to nurses in LA, MS, ND, and SC.
        Our nurses have observed the changes from health care being
    delivered in hospitals to a new emphasis on care delivered in a variety
    of settings throughout the community including home care and community
    centers. With this transition to shorter hospital stays comes the need
    for more intensive patient education and prevention services. These
    needs are creating new delivery models developed by nurse practitioners
    and clinical nurse specialists in partnership with physicians to
    improve the health of vulnerable populations. Nursing centers which
    incorporate the best managed care concepts are providing primary health
    care services to families in a cost-effective manner. These centers
    focus care on education, prevention and wellness while improving access
    to appropriate medical services. Federal dollars, through the NEA, are
    a way to support the changes in education and training of nurses that
    will meet the new health care delivery needs of our communities.
    National Institute of Nursing Research
        Programs of the National Institute of Nursing Research (NINR) at
    the National Institutes of Health (NIH) support research which improves
    nursing practice and the delivery of quality health care. This research
    is essential to the development of improvements and data in clinical
    effectiveness and patient outcomes--information which is vital to the
    continual improvement of quality health care in an environment that is
    increasingly cost-conscious and focused on improved outcomes.
        NINR's initiatives include support for chronic illness adaptation
    issues and lifestyle changes, cognitive impairment intervention
    research, HIV and AIDS prevention and treatment and symptom management.
    Other projects include pain research and genetics.
        The Tri-Council supports the President's fiscal year 1998 proposed
    funding of $61 million for NINR. However, we understand that NINR's
    professional judgement recommendation is a 9 percent increase over
    fiscal year 1997 funding of $59.7 million and the Tri-Council would not
    oppose such an increase in funding. NINR appropriations have
    consistently increased since its inception, but due to its small
    funding base, NINR appropriations have never been adequate. Our
    recommendation for an increase in funding for NINR represents the need
    to adequately support the science of nursing research.
        For other related nursing education, and Public Health Service
    training programs, the Tri-Council recommends the following:
    Disadvantaged Minority Health Scholarships
        This program helps disadvantaged and minority health professions
    students complete their education with funds going directly to the
    student. The Tri-Council recommends an fiscal year 1998 appropriation
    of $18.6 million for this program.
    National Health Service Corps
        The National Health Service Corps (NHSC) uses an array of
    scholarships and loan repayments to direct health professionals into
    underserved rural and urban areas. Nurse practitioners, nurse midwives,
    and physician assistants are entitled to 10 percent of the scholarship
    dollars and are also eligible for the loan repayments program. The Tri-
    Council recommends an fiscal year 1998 appropriation of $78.2 million
    for NHSC recruitment. These funds would provide assistance to health
    care professionals to meet the health care needs of our nation's
    citizens living in designated Health Professions Shortage Areas.
    Rural Health Outreach Grants
        This program supports coalitions of health care providers or
    systems to enhance the level of health care services in rural
    communities that are not adequately served by traditional providers.
    Nursing professions and schools are among the providers who can
    participate in this program. The Tri-Council recommends an fiscal year
    1998 appropriation of $28 million.
    Interdisciplinary Training for Rural Health
        This program addresses shortages of health professionals in rural
    areas through interdisciplinary training projects for several health
    care disciplines. The Tri-Council recommends an fiscal year 1998
    appropriation of $4.1 million.
    Substance Abuse and Mental Health Services Clinical Training (SAMHSA)
        This program trains mental health personnel, including nurses, to
    address prevention, treatment, social and physical aspects of substance
    abuse and mental health, in exchange for repayment through service to
    underserved or priority populations. The program includes a special
    Minority Fellowship Program to help increase diversity in the field.
    The Tri-Council recommends an fiscal year 1998 appropriation of $2.7
    million.
        In conclusion, the changing health care system creates a demand for
    nurses throughout the continuum of care, particularly for nurses with
    advanced degrees. The tremendous increase in the aging population
    requires not only more heath care, but more home and community-based
    care which depends on nursing. The Tri-Council for Nursing believes
    that the demand for nurses will be focused in the areas of primary
    care, home care, and other forms of community based care. The support
    provided by the NEA, the NINR and other public health service programs
    has been invaluable in providing the funding for needed programs, which
    are essential to provide the nursing care needs of our nation's
    citizens.

     TRI-COUNCIL FOR NURSING FISCAL YEAR 1998 APPROPRIATIONS RECOMMENDATIONS
                            [In millions of dollars]
    ------------------------------------------------------------------------
                                                                 Tri-Council
                                                    Fiscal year  fiscal year
                  Nurse Education Act                   1997         1998
                                                                   request
    ------------------------------------------------------------------------
    Advanced Nurse Education......................         12.5         12.5
    Nurse Practitioner/Midwife....................         17.6         17.6
    Nursing Special Projects......................         10.6         10.6
    Nurse Disadvantaged Assistance................          3.7          3.7
    Professional Nurse Traineeships...............         15.9         15.9
    Nurse Anesthetists............................          2.8          2.8
    Nurse Loan Repayment..........................          2.2          2.2
     Total Nurse Education Act....................         65.3         65.3
    Disadvantaged Minority Scholarships (30
     percent of this funding is for nursing)......         18.6         18.6
    National Service Corps........................         78.0         78.0
    Rural Health Outreach Grants..................         28.0         28.0
    Interdisciplinary Training Rural Health.......          4.1          4.1
    Substance Abuse/Mental Health Training........          1.9          2.7
    National Institute of Nursing Research........         59.7         61.0
    ------------------------------------------------------------------------

                                     ______

      Prepared Statement of the National Coalition for Promoting Physical
                                    Activity
        The National Coalition is a collaborative partnership of
    organizations who have identified physical activity and health as their
    primary mission. The need for this coalition is important because the
    benefits from exercise are far reaching. Physical activity helps
    control weight, reduces the risk of dying of heart disease and stroke,
    and reduces the risk of developing diabetes, high blood pressure and
    some cancers. Over 1/3 of all Americans are obese. Nearly 60 percent of
    all Americans are not regularly active and 25 percent of the adult
    population is not active at all. Poor diets and the lack of regular
    physical activity claim nearly 300,000 lives per year. At 420,000
    deaths per year, only tobacco use causes more preventable deaths.
        The National Coalition is extending physical activity public
    education and awareness to our federal and state policy makers. We hold
    the key to changing the national health agenda. For this reason the
    National Coalition has formed, in Washington, D.C., an office of public
    affairs. Over 50 groups work together and sit on the National
    Coalition's Public Policy Advisory Council. Quarterly the National
    Coalition's Office of Public Affairs and other like-minded groups
    strategize and formulate legislative policy. The Public Policy Advisory
    Council has developed fact sheets and lobbying materials and has
    generated grassroots support for increased physical activity awareness
    among the executive and legislative branches of government.
        The National Coalition clearly communicates to the public,
    government and regulatory agencies the value of physical activity. We
    support research, training, and education programs that promote the
    benefits of physical activity. These important issues will be addressed
    in our testimony.
                    fiscal year 1998 funding recommendations
    Centers for Disease Control and Prevention
        The Centers for Disease Control and Prevention and their national
    partners, including the NCPPA, have provided national leadership in the
    development of a strategy for a nationwide prevention program. Part of
    the plan includes enhancing programs and facilities for physical
    activity and promoting healthy food choices. The NCPPA, along with
    other public/private partners, will continue to educate the public on
    the importance of prevention for good health. Prevention efforts will
    decrease the number of heart attacks, strokes, and cases of diabetes,
    obesity, and some forms of cancer. But education and the promotion of
    good health behaviors cannot be properly implemented by all 50 states
    without adequate funding. Therefore, the National Coalition supports a
    total fiscal year 1998 appropriation of $3 billion for the CDC.
        The Centers for Disease Control and Prevention's mission is to
    promote health and quality of life by preventing and controlling
    disease, injury, and disability. As the nation's premier prevention
    agency the CDC monitors this nation's health, conducts research to
    enhance prevention, develops and advocates sound public health
    policies, and promotes healthy behaviors. Primarily the NCPPA works
    with the CDC's National Center for Chronic Disease Prevention and
    Health Promotion. This center works toward the prevention of premature
    deaths and disability from chronic diseases and the promotion of
    healthy personal behaviors.
        Nutrition and Physical Activity Program.--With targeted funding,
    the CDC could build a comprehensive program of physical activity and
    nutrition promotion to reach children, adolescents, and adults in the
    United States. Specifically the components would include the
    development and testing of practical strategies that can be implemented
    in schools, worksites, and communities; support for the states to
    develop fully comprehensive, integrated physical activity and nutrition
    programs; a coordinated communications effort to disseminate effective
    nutrition and physical activity messages to the public; and education
    for health professionals on the benefits of regular exercise, and on
    effective physical activity and nutrition counseling and interventions.
    The NCPPA recommends $15 million for fiscal year 1998.
        Preventive Health and Health Services Block Grant.--The Preventive
    Health and Health Services Block Grant was established in 1982 to meet
    the nation's objectives for Healthy People 2000. It includes provisions
    for states to develop health plans, improve annual reporting of program
    activities, and target public health interventions to populations in
    need. All 50 states are eligible grantees of the block grant program.
    In fact, the block grant serves as the states' primary funding for
    states' health education and risk reduction activities. States can also
    use the money for cholesterol and high blood pressure screenings as
    well as cancer prevention and sex offenses prevention programs. The
    state grants are flexible. States can administer health plans and
    prevention program activities to meet the states' particular and unique
    population needs. Increased block grant funds will help ensure that
    states get maximum return on their block grant dollars and enable them
    to target additional health goals cited in Healthy People 2000. The
    NCPPA recommends $21.5 million for fiscal year 1998.
        Adolescent Health Program.--Risky behaviors, such as a lack of
    physical activity, are established by children, some at an early age.
    Clearly our nation's children and youth need to be educated on the
    harmful affects physical inactivity can have on their health. If
    healthy behaviors are promoted to our children through a comprehensive
    health education program in the schools then the United States may see
    a decline in preventable deaths. Education is cost-effective. For
    example, every one dollar spent on health education saves 14 dollars in
    avoided health care costs. The CDC currently funds 13 states to
    implement a comprehensive school health education program. These states
    provide youth with the information and skills needed to avoid risky
    behaviors. Ideally, NCPPA would like to see more states funded with the
    proper resources to battle physical inactivity and poor nutrition.
    Additional appropriations for adolescent health would extend to all 50
    states the benefits of an overall health education. The NCPPA
    recommends $25 million for fiscal year 1998.
        The CDC has the framework to prevent chronic diseases. CDC
    initiatives promote healthy behaviors, expand the use of early
    detection practices, provide young people high-quality health education
    in schools and community settings, and create healthier communities.
    With proper funding the CDC, as the nation's prevention agency, can
    drastically improve health and prevent many of our nation's unnecessary
    deaths, diseases, and disabilities.
    National Institutes of Health and Agency for Health Care Policy and
            Research
        Investment in biomedical research ensures the good heath and well-
    being of our nation, families, and children. Polls reflect this need
    and show that an overwhelming majority of Americans believe that more
    money should be spent on medical research to better diagnose, treat,
    and prevent diseases. The public is also aware that biomedical research
    extends well beyond the basic treatment of diseases, but also to the
    prevention of diseases. Prevention efforts must include a strong
    message to Americans that physical inactivity is a primary risk factor
    for many diseases.
        While many people know that exercise is good for them, many do not
    know why nor do they understand how much or what kind of activities are
    right for them. Study after study has demonstrated a link between
    physical activity and the prevention of cardiovascular diseases,
    osteoporosis, and diabetes. Exercise also appears to strengthen
    immunity, control weight, reduce blood pressure, promote good mental
    health, and prevent some cancers.
        To supplement the public's understanding of physical activity and
    deliver clear, concise messages in order to get Americans physically
    active, the National Coalition promotes basic biomedical and outcomes
    research. NCPPA supports a total fiscal year 1998 appropriation of
    $14.65 billion for the NIH and $160 million for AHCPR
        The National Coalition for Promoting Physical Activity supports:
      --National Institutes of Health-supported biomedical research
            nationwide. To ensure growing support of the research process
            and capitalize on all opportunities for scientific
            breakthroughs. Possible mechanisms include:
        --An increase in federal funding for research grants and training
                to adequately support efforts related to physical activity.
        --Increase public awareness and assist in the prevention of
                diseases, the National Coalition advocates significant real
                growth in federal funding for biomedical research programs
                of the National Institutes of Health, in particular the
                National Heart, Lung and Blood Institute; the National
                Institute on Neurological Disorders and Stroke; and the
                National Institute on Aging.
      --Federal funding for clinical, behavioral, and outcomes research
            under such agencies as the Agency for Health Care Policy and
            Research. The AHCPR plays an important role through the
            establishment of practice guidelines and conduct of outcomes
            research. Practice guidelines and outcomes research help insure
            that high quality and cost-effective medical services are
            provided.
    President's Council on Physical Fitness and Sports
        The President's Council on Physical Fitness and Sports promotes,
    encourages, and motivates the development of physical fitness and
    sports participation for all Americans of all ages. Since 1956 the
    President's Council has assisted the President and the Secretary of
    Health and Human Services on how to get more Americans physically
    active. This year the President's Council, along with the Department of
    Health and Human Services and the CDC's National Center for Chronic
    Disease Prevention and Health Promotion, released the landmark Surgeon
    General report on physical activity. The NCPPA recommends $1 million
    for fiscal year 1998.
                       a year in review: fiscal year 1997
        Last year the NCPPA advocated that more money be appropriated for
    physical activity programs. Thanks to the work of the subcommittee the
    following programs were funded:
      --The Surgeon General released the first-ever report on physical
            activity. The report highlighted the benefits of physical
            activity and the hazards of leading a sedentary lifestyle. The
            NCPPA has used the Surgeon General's report to invigorate
            Americans in the same way that the first Surgeon General's
            report on smoking and health motivated people against the
            dangers of smoking and tobacco.
      --The CDC released physical activity guidelines for school and
            community programs. These guidelines help young people build
            healthy bodies and establish healthy lifestyles by including
            physical activity in their daily lives. The guidelines were
            developed in collaboration with experts from other federal
            agencies, state agencies, universities, voluntary
            organizations, and professional associations. The guidelines
            help parents, students, teachers, and communities develop
            effective physical activity programs for young people.
                                   conclusion
        America is on the cutting edge of physical activity research. The
    previous examples are just a few of the many reasons why more Federal
    dollars are needed to promote and examine the many benefits of physical
    activity. And the benefits are far reaching. Everyone feels the
    immediate improvement in their health after accumulating 30 minutes a
    day of physical activity over most days of the week. However, often
    what is studied is how physical activity can be used to prevent some
    diseases, stimulate the healing process, or improve disabilities.
        The key research need is not more information on the benefits of
    physical activity. Rather, it is understanding how to get individuals
    and communities to make the changes needed to become more active. There
    is a clear need for: developing and testing effective interventions to
    increase physical activity; and implementing and disseminating those
    programs, which have been demonstrated to be effective.
        Thank you for this opportunity to submit written comments on the
    fiscal year 1998 budget.
                                     ______

        Prepared Statement of Russ Molloy, Esq., Director of Government
         Relations, University of Medicine and Dentistry of New Jersey
        The University of Medicine and Dentistry of New Jersey (UMDNJ) is
    the largest statewide health sciences university in the nation. The
    UMDNJ system consists of seven health sciences schools in five
    different geographic locations throughout the state and includes
    schools of medicine and osteopathic medicine, nursing, dentistry, and
    health professions. It is a system that involves over 100 affiliations
    with other hospitals, community centers and clinics, and education and
    research entities throughout the entire state.
    An International Center for Public Health at University Heights Science
            Park:
         Infectious disease poses a profound threat to American citizens,
    and travel to new geographic areas and an increasingly global economy
    have contributed to a resurgence of infectious microbes. Because New
    Jersey is surrounded by eight international air and seaports, it is
    particularly vulnerable to the spread of global infectious microbes.
    The creation of an International Center for Public Health is a direct
    response to this looming public health crisis.
        The International Center for Public Health is a strategic
    development initiative to create a world-class infectious disease
    research and treatment complex in University Heights Science Park in
    Newark. The Science Park facility will house two core tenants: The
    Public Health Research Institute (PHRI) and UMDNJ's National TB Center
    (one of three federally funded TB Centers).
        The Public Health Research Institute is a nationally prestigious,
    55-year-old biomedical research institute that employs 110 scientists
    and staff in the research of infectious diseases and their underlying
    molecular processes. This facility will permit PHRI to double its staff
    who currently conduct research programs on tuberculosis, AIDS, drug
    discovery, diagnostic development, and the molecular pathogenicity of a
    broad range of infectious diseases. A major focus of PHRI is the study
    of antibiotic resistance of life-threatening bacterial organisms and
    the development of a new generation of antibiotics.
        University Heights Science Park (UHSP) is a collaborative venture
    of the four institutions of higher education located in Newark: UMDNJ,
    Rutgers University, New Jersey Institute of Technology (NJIT)--which
    together conduct $100 million of research annually in the City, much of
    it federally-funded--and Essex County College, which trains technicians
    in 11 science and technology fields.
        The building which houses the Council for Higher Education in
    Newark (CHEN), the higher education institutions that founded
    University Heights Science Park, was completed in phase one of Science
    Park. For almost two decades, CHEN has jointly sponsored educational,
    housing, and retail/commercial projects in Newark's public schools and
    the neighborhoods of University Heights. The construction of the
    International Center will anchor the second phase of Science Park and
    serve as a magnet to attract pharmaceutical, diagnostic and other
    biomedical companies to the Center.
    Violence Institute:
        As the nation's largest public health sciences university, UMDNJ is
    well acquainted with an epidemic gripping this country: the threat or
    perceived threat of violence that jeopardizes our citizen's safety,
    sanity and overall health. We now recognize violence itself as a
    national health problem. The University's declared mission--to teach,
    to discover, to heal, to care--requires that we respond with
    intelligence and effectiveness to violence.
        UMDNJ boasts no fewer than 40 programs statewide which deal with
    violence in a direct way through research, prevention, intervention,
    and/or education. From studying the neuroanatomy of aggression, the
    neurochemistry of violence in alcoholics, and the effectiveness of
    therapeutic services for sexually abused children and their families,
    UMDNJ has developed programs which address elder abuse prevention,
    mediation training, school curriculum development of social problem
    solving, and suicide prevention.
        Over the past five years, these programs have achieved national and
    local recognition, and, collectively, they have garnered almost $24
    million in funding--only half of which came from federal sources. Our
    goal is to coordinate a comprehensive approach to understanding and
    preventing various aspect of violence, including child abuse, youth
    abuse, juvenile violence, violence against women, elder abuse,
    substance abuse, the development of aggression, the biological
    mechanisms of violence, and the treatment of traumatic injury as a
    result of violence. We seek your assistance to build on our efforts and
    to develop a Violence Institute which will organize these ongoing
    activities in a comprehensive manner.
        The results to be achieved include enhancing the resources of a
    state-wide health sciences university to combat violence, developing
    new ways to attack this problem, determining the most effective
    approaches, making resources more readily available to community
    partners, and ultimately, reducing the incidence, impact and costs--
    financial, social and personal--of violence.
    Child Health Institute of New Jersey:
        The knowledge and technology to unravel the miracles of
    development, the biologic mechanisms that convert the one-celled
    fertilized ovum into a feeling, thinking, conscious individual, are now
    at hand. The Child Health Institute of New Jersey will implement a
    novel vision for the integrated study of human development and its
    disorders. Our strategy explicitly recognizes that changing
    environmental conditions alter gene function during development,
    maturation and aging, necessitating study of the whole individual as
    well as the individual gene. The human child during development appears
    to be more sensitive to the impact of the environment, both chemical
    and social, than at any other period of life. Employing this approach,
    Institute scientists will study human growth and development and the
    emergence of cognition, emotion, consciousness and individuality. Since
    growth mechanisms are now known to govern function throughout life,
    abnormalities of development, maturity and aging will be characterized
    employing unique insights obtained during development.
        New Jersey serves as an ideal laboratory for this project. Our
    state is the most densely populated, leads the country in the emerging
    suburbanization of America and is the heartland of the US medical-
    pharmaceutical industry. The state also possesses some of the poorest
    urban environments in the nation, and the impact of the decaying urban
    environment has enormous implications on human growth and development.
    The Child Health Institute will examine not only the biological and
    chemical effects on childhood, but the effects of behavioral and
    societal influences as well.
        Ongoing insight into mechanisms regulating growth and development
    holds the promise of altering medical approaches to recovery of
    function after illness and injury. For example, recent discoveries at
    our UMDNJ-Robert Wood Johnson Medical School (RWJMS) and elsewhere now
    indicate that brain nerve cell division is governed by special growth
    factors in utero. These factors can be used in the adult to accomplish
    a feat long thought impossible: the regeneration of nerve cells. This
    striking discovery points the way to regrowth and recovery of function
    after stroke, head and spinal trauma, and Alzheimer's and Parkinson's
    diseases. Parallel discoveries in other areas of developmental biology
    suggest that a variety of tissues, including skin, bone and blood
    vessels, should now be regarded as renewable resources. These and
    related findings now prompt a thoroughgoing reevaluation of the entire
    process of aging. The new Institute is designed to pursue these
    revolutionary findings and forge this new approach to medicine.
    National Tuberculosis Center:
        The New Jersey Medical School National Tuberculosis Center at UMDNJ
    was founded in January, 1993, as a joint venture between the UMDNJ-New
    Jersey Medical School and University Hospital and the New Jersey
    Department of Health and Senior Services.
        In November, 1993, it successfully competed for funding from the
    National Centers for Disease Control and Prevention and achieved
    designation as one of the three Model TB Prevention and Control Centers
    in the United States. Since then it has developed into an
    internationally and nationally recognized institution dedicated to the
    diagnosis and treatment of patients with tuberculosis and multidrug
    resistant tuberculosis, as well as a training and education center for
    all aspects of tuberculosis and tuberculosis control. Additionally,
    extensive clinical studies have been and are being carried out on new
    treatment and diagnostic and behavioral measures in TB control.
        Directly observed therapy for tuberculosis adopted by the World
    Health Organization as its global standard was first used in our
    Center's predecessor clinic in the mid 1970s. In addition, the Center's
    educational staff have been asked to help implement and replicate our
    nurse case management TB care system for use in many different areas in
    the United States.
        National TB rates have fallen for the past four years, validating
    the expenditure of major funds for national TB control efforts. In our
    basic catchment area in Newark, TB rates for 1996 were down 30 percent.
    In Jersey City, our control community without benefit of a model
    center, TB rates were up almost 30 percent resulting in an invitation
    and support to replicate our Hudson County program in Jersey City.
        It is extremely gratifying to be able to document the direct effect
    that a federal expenditure has had on the health and welfare of its
    citizens. The New Jersey Medical School National Tuberculosis Center at
    UMDNJ has achieved its initial goals and continues to perform its
    mission to decrease mortality and morbidity for tuberculosis and drug
    resistant TB both in New Jersey and the rest of the nation.
    Geriatric Education Center:
        Geriatric Education Centers (GECs) offer education and training
    opportunities for health care professions faculty, practitioners,
    students and others to enhance the quality and availability of health
    care for older citizens. Since the inception of GECs in 1983, more than
    300,000 people have been trained in geriatric care. These Centers offer
    technical assistance and consultation to academic institutions and
    health care facilities on issues of program planning, curriculum
    development, and legislative and policy issues in geriatric care.
        Established in 1990 through a federal grant from the Department of
    Health and Human Services/HRSA/Bureau of Health Professions, the New
    Jersey Geriatric Education Center (NJGEC) is a collaborative effort
    among the schools of UMDNJ including its three medical schools and its
    schools of dentistry and health related professions, along with Seton
    Hall University, the East Orange Veterans Administration Medical Center
    and Newark Beth Israel Medical Center. Administered by the UMDNJ-School
    of Osteopathic Medicine (SOM) in Stratford, NJ, all NJGEC programs and
    goal-related activities are initiated, coordinated and monitored
    through SOM's Center for Aging.
        The NJGEC offers training and continuing education programs for
    multiple disciplines and technical assistance and consultation in the
    field of aging. Over the past six years, the NJGEC has worked with
    various state agencies, Area Health Education Centers (AHEC's), health
    care facilities and academic institutions in supporting training needs
    in geriatrics and gerontology across the state. Since 1990, the NJGEC
    has provided almost 150 continuing education and in-service training
    programs to some 6,400 health care professionals. The NJGEC achieves
    statewide penetration and regional accessibility for health care
    professionals through programs in the north, central and southern
    regions of New Jersey.
        Although New Jersey ranks ninth among all states in the number of
    citizens 65 years of age or older, it is one of only two states for
    which federal funds for its GEC have expired. Also, recent changes in
    New Jersey have profoundly affected the state's long-term care system
    and have led to the development of long-term care alternatives such as
    assisted living facilities and alternative family care homes so that
    older individuals can remain in their communities in a less
    restrictive, less medicalized environment. In 1994, the State
    Department of Health designed a ``single point of entry'' program--
    known as New Jersey EASE--for all geriatric services. This program has
    streamlined the structure and led to the reorganization of the
    department into a new entity--the Department of Health and Senior
    Services (DHSS)--that consolidated more than 20 state and federal
    programs into one cabinet-level agency.
        These changes in New Jersey's health care environment have created
    the need for additional training of health professionals to implement
    the EASE system and thus have created a unique opportunity for NJGEC to
    enter into a new ``consortium'' with Rutgers University and the New
    Jersey DHSS. The consortium exemplifies a true academic-public
    partnership that will permit the partners to work together under the
    aegis of the NJGEC to accomplish what no single entity could do
    effectively alone: provide health promotion and case management
    training emphasizing the interdisciplinary approach to geriatric care.
    National Family and Pediatric HIV Resource Center:
        Since 1990, the National Pediatric and Family HIV Resources Center
    has assumed a highly visible role in providing training and technical
    assistance to professionals from throughout the United States related
    to children, youth, and families with HIV infection. Located at UMDNJ's
    New Jersey Medical School in Newark, the Center has access to
    information on the cutting edge of HIV services in the areas of health
    care delivery, research, and education and has served as a clearing
    house of information for HIV care and providers and families alike.
        The Center is the only national organization providing technical
    assistance and training to meet the needs of children, women, and
    families with HIV. Health care providers from around the United States
    and the world come to the Center to observe clinical care of children
    with HIV, techniques to integrate research and care, organizational
    approaches to program development, and approaches which foster and
    mobilize community support. The Center, which is primarily funded
    through the Pediatric AIDS demonstration of the Ryan White CARE Act, is
    dedicated to supporting the development of community-based care systems
    for children, women, youth and families afflicted with HIV/AIDS
    throughout the United States.
    AIDS Education and Training Center:
        New Jersey cities lead the United States in the percentage of 25 to
    44 year-olds dying from AIDS. Furthermore, the state leads the nation
    in the percentage of AIDS cases among women; the state is third in the
    nation in number of pediatric cases, and is fifth-highest among states
    in the numbers of adult and adolescent AIDS cases.
        UMDNJ, at University Hospital and Medical Center in Newark, serves
    the state of New Jersey as one of the nation's 15 national AIDS
    Education and Training Centers (AETC). The New Jersey Center (NJAETC),
    which is funded through the Ryan White CARE Act, serves to sustain and
    expand the base of health care providers who are effectively educated
    and motivated to counsel, diagnose, treat and manage individuals with
    HIV infection and assist in the prevention of high-risk behaviors which
    may lead to infection. The Center was established in 1989 and is
    administered through the Center for Continuing Education in the Health
    Professions at UMDNJ.
        Because it is based at UMDNJ, the NJAETC is well situated for the
    rapid dissemination of state-of-the-art HIV-related clinical
    information to primary care providers throughout the state. The NJAETC
    works with expert faculty to quickly translate new scientific and
    epidemiologic information for use in critical clinical practice
    settings such as community health centers and agencies providing
    Medicaid managed care. Although the number of HIV-trained health care
    providers has not kept pace with the scope of the epidemic in New
    Jersey, NJAETC's ``train-the-trainer'' programs maximize the impact of
    dollars spent on training and creates a core of HIV experts throughout
    the state. Prevention is the central weapon in the fight against AIDS,
    and 25 percent of the Center's training resources are dedicated to
    programs providing health professionals throughout New Jersey with the
    latest information and training on behavior change interventions.
                                     ______

     Prepared Statement of Dennis E. Lower, Executive Director, University
                        Heights Science Park, Newark, NJ
                              project description
        Due to an increasingly global economy, infectious diseases now pose
    a profound threat to national and international security. In 1980,
    there were 280 million international travelers. By the year 2000 there
    will be 400-600 million international travelers. Recently, Vice
    President Gore declared that our national security now includes
    defending the nation's health, and ``there is no more menacing threat
    to our global health today than emerging infectious diseases''
    (American Society of Microbiology News, September, 1996). Diseases
    arising in any part of the world are repeatedly and rapidly introduced
    into the United States where they threaten our national health and
    security. Dr. Anthony Fauci, Director of the National Institute of
    Allergies and Infectious Diseases (NIAID), states that the ``problem
    posed by emerging and re-emerging infections is one of unparalleled
    complexity * * * A plan to prepare for future challenges must emphasize
    fundamental research * * * (and) research capacity building.'' Central
    to the NIH approach are a strong national infectious disease research
    infrastructure, collaborative international studies, multidisciplinary
    studies, and public-private sector interaction. The creation of the
    International Center for Public Health is a direct response to the
    emerging national and international infectious disease crisis.
        The International Center for Public Health is a strategic
    initiative that will create a world class, infectious disease research
    and treatment complex in University Heights Science Park, Newark, New
    Jersey. Science Park is located in a Federal Enterprise Community
    neighborhood. The International Center will have substantial local,
    regional, national and international impact as it addresses many
    critical social, economic, political and health related issues. The
    Center is a $70M anchor project that will launch the second phase of a
    fifty-acre, $300M mixed-use urban redevelopment initiative, University
    Heights Science Park. The facility will total 144,000 square feet and
    house two tenants: the Public Health Research Institute (PHRI) and the
    University of Medicine and Dentistry of New Jersey's (UMDNJ) National
    TB Center, one of three Federally funded TB centers. Included in the
    development costs for the Center are funds to prepare three adjacent
    building pads. These sites will be simultaneously marketed to private
    biomedical companies, and will generate $60M of additional
    construction. Development of the International Center for Public Health
    is a priority project for UMDNJ, Rutgers Newark, the New Jersey
    Institute of Technology, Essex County College and the City of Newark.
        PHRI, the core tenant for the International Center, is a nationally
    prestigious, 55 year old biomedical research institute that currently
    employs 110 scientists and staff in the research of infectious diseases
    and their underlying molecular processes. This facility will permit
    them to double their scientific staff. Presently they conduct research
    programs in tuberculosis, AIDS, drug discovery, diagnostic development,
    and the molecular pathogenicity of a broad range of infectious
    diseases. A major focus of PHRI research is the study of antibiotic
    resistance to life-threatening bacterial organisms, and the development
    of the next generation of antibiotics.
        Joining PHRI to form the International Center will be UMDNJ's
    National Tuberculosis Center. The TB Center is one of three Model
    Tuberculosis Prevention and Control Centers in the United States funded
    by the CDC. It will add an important clinical component to the
    International Center for Public Health, since many TB patients also
    manifest other infectious diseases. The TB Center was founded in 1993
    in response to a national resurgence of antibiotic resistant
    tuberculosis strains. At that time Newark had the nation's second
    highest rate of TB cases for a major city. Together PHRI and the
    National TB Center will create a world class research and treatment
    complex having substantial local, regional, national and international
    impact.
        Other collaborators in the development of the International Center
    include the New Jersey Department of Health & Senior Services (NJDHSS)
    and the pharmaceutical industry. Responsible for overseeing all
    statewide public health initiatives, NJDHSS will contract with the
    International Center to have cutting edge molecular epidemiology
    services provided to the State of New Jersey. Expanding the strategic
    use of molecular epidemiology to direct public health activities will
    facilitate prompt identification and containment of emerging and re-
    emerging pathogens. New Jersey's major biomedical companies will also
    participate in the International Center. An infectious disease
    consortium will be developed to serve as a forum for disseminating
    fundamental research on the underlying molecular processes of
    infectious disease organisms. This research will contribute to
    pharmaceutical industry development of new drug therapies for
    antibiotic resistant microorganisms. Private industry R&D facilities
    contiguous to the International Center are also being explored.
             the anchor project for university heights science park
        The International Center for Public Health will be located in
    University Heights Science Park (UHSP). UHSP is a collaborative venture
    of Newark's four higher education institutions, the City and Community
    of Newark, and private industry designed to harness university science
    and technology research as a force for urban and regional economic and
    community development. The university sponsors, New Jersey Institute of
    Technology (NJIT), The University of Medicine & Dentistry of New Jersey
    (UMDNJ), Rutgers University at Newark, and Essex County College
    annually conduct nearly $100 million of research in Newark.
        At buildout UHSP will include one million square feet of technology
    commercial space, 75,000 square feet of technology incubator space,
    20,000 square feet of retail business opportunities, an 800 student
    technology high school, two blocks of new and rehabilitated housing and
    a community day care center. The $10M first phase of Science Park is
    complete and includes a technology business incubator, a 100 child day
    care center and industrial prototype laboratories for biomaterials and
    medical devices. The construction of the International Center will
    anchor the second phase of Science Park, and serve as a magnet to
    attract pharmaceutical, diagnostic and biomedical companies to Science
    Park. Phase II includes the preparation of three additional building
    pads that will be marketed and built simultaneously with the
    construction of the International Center. The Center will have the same
    impact on the Park as an anchor store does in a retail shopping mall.
                       what this project means to newark
        The International Center means urban technology job opportunities,
    improved health care, and creative educational opportunities for
    Newark's youth. For minority and urban residents it is one challenge to
    acquire necessary job skills, but it is another to have the means to
    travel to where the jobs are. In the last 20 years Newark has lost
    35,000 private sector jobs, many having moved to the western suburbs.
    Science Park is a development strategy to bring well-paying jobs back
    to Newark's urban center, providing City residents with access to the
    technology jobs of the 21st century. This project, including three
    additional private sector buildings that it will leverage, will provide
    3,000 direct and indirect construction and permanent jobs. The
    permanent job opportunities are well paying with a wide range of
    qualifications and educational requirements. They include custodial and
    clerical positions, lab technicians, medical personnel, researchers,
    and administrators.
        The City of Newark is New Jersey's largest municipality with
    275,000 residents, 84 percent of whom are minorities, plus a
    significant number of undocumented and uncounted aliens. It is also the
    State's most at-risk municipality when considering the health of its
    residents. With unemployment hovering around 14 percent, Newark carries
    a heavy burden of poverty reflected not only in low per capita wages,
    but also in the highest rate of infectious diseases in the State
    (tuberculosis, AIDS and sexually transmitted diseases). Being located
    on the front line of infectious diseases, the new International Center
    will provide cutting edge diagnostic and treatment support to the
    City's health care providers, thereby ensuring that Newark residents
    will benefit from the latest discoveries in the battle against
    infectious diseases.
        Today's youth are tomorrow's scientists. As a commitment to the
    education of Newark's youth, Science Park projects include school
    linkages and programs with technology tenants. PHRI, the proposed core
    tenant in The International Center for Public Health, will establish
    two educational programs to nurture and develop the interest of urban
    and minority students in science and science-related careers.
    ScienceLab will be a collaboration with The Newark Public Schools to
    provide a year-round science education program for Newark high school
    students and science teachers in a ``real-time'' private research
    institute environment. The International Center will also sponsor a
    BioMentors program and be part of the Westinghouse Science Talent
    Search program. The goal of these educational programs is to influence
    and encourage Newark high school students to pursue careers in
    biomedical sciences, and one day employ their skills in Science Park
    companies.
    how the international center for public health enhances and implements
        department of health and human services (hhs) and department of
                              education objectives
        The International Center for Public Health (ICPH) is a creative and
    unique public/private partnership located in University Heights Science
    Park, Newark, New Jersey that will combine: infectious disease
    research; pharmaceutical industry participation; international, state
    and regional public health collaborations; high school urban and
    minority science education initiatives; urban economic and community
    redevelopment; and high-technology job creation in a federally
    designated Enterprise Community.
        The Centers for Disease Control and Prevention (CDC) has
    established specific goals in the areas of surveillance, applied
    research, prevention and control, and infrastructure. The ICPH will
    serve as an invaluable resource for the CDC in achieving critical
    objectives in each of those areas.
        Surveillance.--One CDC goal is the establishment of a ``global
    consortium of closely linked epidemiology/biomedical research centers
    to promote the detection, monitoring, and investigation of emerging
    infections.'' Another specific focus is the ``detection and monitoring
    of trends of antimicrobial resistance in institutional as well as
    community settings.'' The International Center will contribute to the
    achievement of these objectives as follows:
      --Since the 1980's, Staphylococcus aureus, the leading cause of post-
            surgical infections, has shown increasing resistance to
            methicillin, the last effective antibiotic to treat it. If
            current trends continue, modern medicine as practiced today
            (bypass surgery, transplants, chemotherapy) will be in serious
            jeopardy. The first multi-hospital study of methicillin
            resistant Staphylococcus aureus (MRSA) is currently being
            performed by the Public Health Research Institute (PHRI), the
            core tenant of the proposed International Center.
      --PHRI has forged a research coalition and established the Bacterial
            Antibiotic Resistance Group dedicated to understanding and
            combating antibiotic resistance problems.
      --The UMDNJ National TB Center is a regional referral center
            providing clinical consultation and services to patients with
            primary and acquired resistance to anti-TB medications. In
            addition, it provides consultation services to the State of New
            Jersey, which requires all patients with drug resistant
            diseases to have their treatment regimens reviewed by the TB
            Center.
      --The TB Center currently is involved with the CDC in testing
            software applications which tracks screening and prevention for
            Health Care Workers (Stafftrac).
        Applied Research.--CDC goals focus ``on applied research and the
    integration of laboratory science and epidemiology with public health
    practice.'' An important emphasis is to accurately characterize the
    ``public health and economic impact of both well established and
    emerging infections.'' Partnerships with ``public agencies,
    universities and private industry to support research in surveillance,
    epidemiology, and prevention of emerging infections'' are recognized
    explicitly as critical linkages to achieve CDC's applied research
    goals. The International Center will contribute to the achievement of
    these objectives as follows:
      --PHRI is currently conducting the first economic impact study of
            antibiotic resistance. In a contract with the Lewin Group, a
            model is being developed which will calculate the cost impact
            of MRSA in New York City. The model can be applied nationally,
            as well.
      --PHRI is the only independent research institute focused on
            infectious disease research and the implications of that work
            for public health. Research includes drug discovery, vaccine
            development, rapid diagnostic techniques, and the underlying
            molecular mechanisms of infectious organisms and the host
            (immune system) response.
      --The TB Center is a member of the Clinical Trials Consortium of the
            CDC, with a relationship and mechanism in place to test
            vaccines, drug delivery and diagnostic techniques.
        Prevention and Control.--CDC goals include the ``creation of an
    accessible and comprehensive U.S. infectious disease database that
    increases awareness of infectious diseases and promotes public health
    action.'' The ICPH will contribute to the achievement of these
    objectives as follows:
      --PHRI maintains the world's largest collection of drug resistant
            tuberculosis strains, genetically characterized and accessible
            by electronic means. PHRI has implemented computer matching
            programs so that new strains can be compared with others
            already known, thus detecting potential transmission between
            previously unconnected patients and supporting epidemiological
            means to stop such transmission.
      --The International Center will expand its database to include other
            microbial organisms, including MRSA, VREF, and PRSP, thereby
            establishing a basis for broad molecular epidemiology of other
            infectious agents, including those which cause food-borne
            disease.
      --The TB Center has established a case management system utilizing
            directly observed therapy as the standard of care. This model
            is now being developed for national replication.
      --The National TB Center currently provides prevention and control
            training to physicians, nurses, EIS officers, case managers and
            TB control officers in PA, MD, OH, AR, DE and Chicago.
        Infrastructure.--The CDC infrastructure goals recognize the need
    for ``state-of-the-art physical resources--laboratory space, training
    facilities, and equipment,'' and for ``facilities for maintaining
    specimen banks of etiologic agents and clinical specimens.'' The
    International Center will contribute to the achievement of these
    objectives as follows:
      --Included in the International Center will be BL-3 facilities to
            handle dangerous strains under safe conditions.
      --The Center will expand its current practice and ability to teach
            others and establish similar labs elsewhere in U.S. and
            overseas. Currently PHRI and the TB Center are either in
            discussions with or provide services to Egypt, Singapore,
            Indonesia, Russia, the Netherlands, China, India and the
            thirteen nation European Economic Community.
        The National Institute of Allergy and Infectious Diseases and
    National Institutes of Health (NIAID, NIH) have established specific
    research goals regarding ecological and environmental factors,
    microbial changes and adaptations, host susceptibility, vaccines,
    therapeutics and other control strategies, and infrastructure. The ICPH
    will provide an invaluable resource in achieving critical objectives in
    each of those areas.
        Ecological and Environmental Factors.--The NIAID research agenda
    includes multidisciplinary studies on the natural history of disease,
    the implementation of field applicable transmission control strategies,
    the development of rapid, sensitive, and field applicable diagnostic
    techniques, and new technologies to predict disease outbreaks. The
    International Center will contribute to the achievement of these
    objectives in the following way:
      --PHRI is a working model, financed in part through private sources,
            which accomplish all of the above objectives and demonstrates
            the feasibility of public-private initiatives in this area.
      --The TB Center's directly observed therapy case management model is
            ideal for conducting clinical research by permitting accurate
            reporting of events and objective measurement of outcomes.
        Microbial Changes and Adaptations.--The NIAID research agenda
    includes new targets for drug and vaccine development, greater public-
    private sector interaction in such development, antimicrobial
    resistance, access to pathogen isolates from well-characterized patient
    populations in order to relate molecular or functional characteristics
    of the microbe to its disease causing properties. The International
    Center will contribute to the achievement of these objectives in the
    following way:
      --PHRI currently is involved in significant public and privately
            research in anti-bacterial and anti-fungal drug discovery.
        Host Susceptibility.--The NIAID research agenda includes the
    identification of targets and mechanisms of protection against emerging
    or re-emerging pathogens as the basis of vaccine development, and
    population-based studies to understand the genetic basis of individual
    susceptibility to disease. The International Center will contribute to
    the achievement of these objectives in the following way:
      --PHRI is presently sponsored by the U.S. Army in AIDS vaccine
            studies, with large animal trials to begin this summer.
        Infrastructure.--The NIAID research agenda includes expanding
    opportunities for international collaborations, creating cooperative
    research centers where relevant aspects of basic, clinical and field-
    based research can be concentrated on emerging disease agents, and
    utilization of domestic and international clinical studies for
    collection of data on the epidemiology and natural history of disease.
    The International Center will contribute to the achievement of these
    objectives in the following way:
      --The coordination and collaboration of PHRI, the National TB Center,
            and the NJ Department of Health Laboratories, along with
            research activities of both PHRI and UMDNJ, will create a
            unique combination of research, clinical, patient, and public
            health resources. To this will be added strong private
            participation by the pharmaceutical industry of NJ,
            representing many of the world's largest and most significant
            companies.
        Science Education.--In addition to its infectious disease research
    interests, the NIH is also concerned with the science education of
    students from an early age through high school, with a particular focus
    on minority student education. The International Center will contribute
    to the achievement of these objectives in the following way:
      --For the past seven years, PHRI has operated a summer high school
            minority student program. As the core tenant of the
            International Center for Public Health, PHRI will collaborate
            with University Heights Science Park and the Newark Public
            Schools, who are now developing a new science and technology
            high school, and include state-of-the-art teaching laboratories
            in the International Center. Two year-round science education
            programs for Newark high school students and science teachers
            will be created (BioMentors and ScienceLab). Their purpose is
            to expose students to the biomedical sciences and careers, and
            give science teachers laboratory experience that will update
            and enrich their classroom teaching. In addition, the TB Center
            conducts a summer student research internship program for
            college students interested in the medical sciences. Together,
            these programs provide a national model.
                             request for assistance
        The University Heights Science Park is requesting $3M (three
    million dollars) from the House Appropriations Subcommittee on Labor,
    Health and Human Services and Education for fiscal year 1998 to support
    the Phase II development of Science Park: the construction of the
    International Center for Public Health. Such support will leverage
    Phase II development that totals $130M, and creates nearly 3,000 direct
    and indirect construction and permanent technology jobs. These funds
    will be used specifically for construction related project costs. This
    project is a top priority for UMDNJ, Rutgers Newark, the New Jersey
    Institute of Technology, Essex County College and the City of Newark.
        I want to thank the Committee for the opportunity to present this
    request. We appreciate your consideration of our proposal, and hope to
    receive your support for the creation of the International Center for
    Public Health at University Heights Science Park, Newark, NJ.
                                     ______

        Prepared Statement of Alice Barnett, Director, Health and Human
                          Services, City of Newark, NJ
        Mr. Chairman and Members of the Subcommittee: On behalf of the City
    of Newark, New Jersey, I appreciate the opportunity to appear before
    you today. I am Alice Barnett, Director of Newark's Department of
    Health and Human Services. I am here to urge your support for a very
    important initiative to reduce teen pregnancy and to provide a
    comprehensive prevention, intervention and case management program to
    reduce infant mortality and low birth weight babies for those
    pregnancies that do occur. The City of Newark like many other urban
    areas across the country is facing a host of extraordinary public
    health challenges. We are unique, however, in that our high rates of
    teenage pregnancy and infant mortality are matched by corresponding
    increases in the incidence of HIV and AIDS infection rates,
    tuberculosis and substance abuse amongst our adolescents. I am
    respectfully requesting your assistance with the ever escalating rate
    of teenage pregnancies in an already seriously at-risk and compromised
    adolescent population.
        The City of Newark has implemented without federal resources, a
    comprehensive prenatal program. We have also implemented, through
    various maternal and child health consortia several programs to promote
    early prenatal care for adolescents. We know however that the complex
    issue of adolescent pregnancies, adolescent sexuality, requires a far
    greater and innovative response. We need to, we must, provide sex
    education information, while we are promoting abstinence for girls and
    boys. We must urge the reinforcement of this message by every adult,
    every parent, every school health education program and class, every
    child protection agency, every church and mosque, every athletic and
    social service agency and each volunteer and mentor in our City. Our
    task requires a city-wide, united effort: we must capture the
    imagination of our young children and redirect their energies and their
    focus. Teaching abstinence is useless if it is directed only at the few
    who are readily willing to hear the message. Many of our teens are
    already sexually active. Many are already involved with drugs. Many are
    already infected with HIV. We must encourage abstinence through a very
    urban, cutting edge, uniquely Newark program, that permits young men
    and women to reinvent themselves; to put on the armor that permits you
    at 16 to refrain from sexual activity, and still be the 90s version of
    ``cool''. We must encourage our teens to adopt a new and healthy
    lifestyle and outlook: A Bright Futures outlook. Also, through this new
    initiative, we must reach out to the adolescent most at risk: the
    homeless, the abused, and the adolescent involved with the juvenile
    justice system and, the alternative school system.
        We realize that such initiatives are not new or unique. What is
    unique is the level of commitment from this City and its core health,
    education and social service providers. We have always had the support
    of our maternal and child health consortium, for this new effort we
    have secured the support of the institutional and community based
    agencies that convened for our empowerment zone application planning
    process.
        Our proposal in fact seeks to empower the adolescent to refrain
    from early sexual activity, learn the public posture that enables
    continued abstinence through adolescence to marriage. We seek also to
    create an atmosphere of trust for our adolescents. Pregnant teenagers
    must learn that caring, responsive adults must be immediately informed
    of unintentional pregnancies. This will then facilitate the early,
    first trimester, entry of adolescents into a prenatal care system, the
    critical entry point for good birth outcomes. The City already secured
    the support of a host of local partners, including the Newark Division
    of Health, the Newark Board of Education, AD House, the Division of
    Public Welfare and a major hospital in our area.
        The City must address all of these problems I've mentioned, but we
    are asking you to consider discretionary assistance so that we may
    focus especially on this initiative to reduce teen pregnancy by
    promoting abstinence as the preferred choice of the Newark teenager.
    And, for pregnancies that do occur, with their corresponding poor
    infant outcomes because of delayed prenatal care; a comprehensive
    program consisting of the early identification of at-risk adolescents,
    education, and case management. Accordingly, Mr. Chairman and Members
    of the Subcommittee, I would ask you to consider supporting this worthy
    initiative with $900,000.00 in discretionary assistance to help us give
    Newark's teenagers and its infants a healthier start.
        Mr. Chairman this project will not only help to identify and assist
    young women who stand in, desperate need of empowerment training and
    appropriate health education training, but it also provides them with
    the tools and resources to access and obtain the care that they need to
    lead them through a full term pregnancy and to a healthy live, baby.
        The goal of this initiative is to reduce teen pregnancy and, for
    those pregnancies that do occur, the corresponding infant mortality
    rate through a comprehensive program consisting of prevention,
    intervention and case management. In implementing this program, Mr.
    Chairman, we have developed 4 core objectives:
      --To increase utilization of existing services through a central case
            management unit;
      --To improve the health of students receiving case management
            services with the provision of primary health and dental care
            in an adolescent clinic at the Newark Division of Health;
      --To reduce teen pregnancy through the expansion of human growth and
            development curriculum, which promotes abstinence as the only
            safe option, to 500 fourth grade students and continue to
            provide for those same students through the tenth grade; and
      --To reduce adolescent pregnancy, a school based male responsibility
            curriculum starting in the fourth grade and continuing through
            the tenth grade.
        Mr. Chairman, this project will reduce unintentional teen
    pregnancies by strengthening and empowering adolescents to adopt
    abstinence. It will also help to identify and assist young women who
    stand in desperate need of improved prenatal care, but it also provides
    them with the tools and resources to access and obtain the care that
    they need to lead them through a full-term pregnancy and to a healthy
    live baby.
        Again, Mr. Chairman and Members of the Subcommittee, we thank you
    for your time, and urge you to provide the funding needed to undertake
    the demonstration effort we have outlined and give Newark adolescents a
    Bright Future.
                                     ______

         Prepared Statement of Michael Weinstein, President, L.A. AIDS
                             Healthcare Foundation
        My name is Michael Weinstein, and I am President and co-founder of
    AIDS Healthcare Foundation (AHF), the largest community provider of HIV
    medical and residential services. It is a leader in HIV medicine and
    has distinguished itself by detecting trends and taking action,
    particularly when emerging patterns of disease have a major impact on
    the quality and delivery of care. This philosophy permeates its
    outpatient healthcare clinics as well as its residential nursing
    facilities, generally referred to as Houses.
        I am here to request your assistance in funding two demonstration
    projects of national significance: A Comprehensive Residential Care
    Treatment Facilities Project for people with HIV/AIDS--and a Medicaid
    Managed Care Initiative for HIV/AIDS victims.
           comprehensive residential treatment facilities initiative
        AHF is engaged in the transition from exclusively hospice care to
    adding skilled nursing care at the houses and will continue to serve
    those regardless of their ability to pay and is seeking $3.5 million
    for the project which could be funded by the Healthcare Financing
    Administration and/or the Health Resources and Services Administration.
    Presently, over 70 percent of the 50 beds operated by AHF are Skilled
    Nursing/stepdown care (aggressive treatment) beds under the state of
    California's Congregate Living Health Facilities (CLHF) licensure.
    About 30 percent are hospice (palliative) beds. A year ago, 100 percent
    of the beds were hospice care. With the introduction of more effective
    anti-HIV retro viral therapies, the hospice population began to
    dramatically decrease while the skilled nursing need population
    continuously grew. AHF will be re-opening Chris Brownlie House, its
    third facility in May, 1997. We expect an even higher ratio of
    residents at Brownlie housed under the CLHF/Skilled nursing need
    program. The houses are strategically located in three of the major
    HIV/AIDS epicenters: Downtown, West Hollywood and South Central Los
    Angeles. The demographics in these areas represent a mixture of ethnic,
    gender, sexual orientation, drug users, socio-economic, cultural and
    linguistic diversity.
        AHF houses presently operate three programs: Hospice, Skilled
    Nursing (Intermediate/step down care), and ARV (anti-retro viral) Drug
    Monitoring.
    Hospice
        AHF opened the first AIDS Hospice in the nation when it founded the
    Chris Brownlie House in 1988. Many national international models have
    been patterned after Chris Brownlie, creating a network of facilities
    where people with AIDS have died with dignity and comfort. Hospice is a
    multi-disciplinary program involving the disciplines of medicine,
    nursing, pharmacy, bereavement, spiritual psycho-social, dietary, and
    psychiatry. This is supplemented by energetic volunteer and activities
    programs. All admitted residents under must be certified by a physician
    and have a life span prognosis of six months or less. On an average,
    AHF had three times as many residents die in the first six months of
    1996 than in the second semester. Although this population is presently
    shrinking, the impact is still very palpable at our facilities.
    Skilled Nursing Care
        The Skilled Nursing program formally began at all three facilities
    in May, 1996. Any individuals who have a continuous-to-intermittent
    skilled nursing need qualify for this program. The majority of our
    residents at the AHF houses qualify for this type of care. Some of
    these skilled nursing needs may include, but are not limited to, a
    combination of the following: wound care, tracheotomy/nasal catheter
    maintenance, gastronomy or other tube feeding, comatose or bedridden,
    incontinence, IV therapy, complex drug regimen monitoring, skin
    conditions such as decubitus ulcers, or acute pulmonary conditions.
    This program is also multi-disciplinary in nature with much more
    emphasis on the medical and clinical aspects of care. Neither Medi-Cal
    nor Medicare provide reimbursement for this type of need. It is also
    unusual for private insurance entities to compensate for this service.
    Anti-retro viral Drug Monitoring
        The ARV drug monitoring program at the AHF houses officially began
    on April 1, 1997. This inpatient drug adherence program is designed to
    start off or to support individuals who have issues of compliance with
    their ``HIV cocktail'' therapy, and who do not have a supportive home
    environment. The goal is to alter their behavior and inculcate positive
    drug regimen habits. In addition to the in-house disciplines of
    medicine, psycho-social, dietary, and psychiatry, AHF will integrate
    outside support on which the resident will depend once this 4-8 week
    program ends. This includes the resident's significant others, family
    and close friends, and other community-based organizations involved in
    housing, treatment advocacy, case management, outpatient support
    groups, job developers and career counselors. Multi-disciplinary
    protocols have already been developed addressing the variety of issues
    and populations associated with this program. The goal is to have the
    patient internalize successful treatment adherence strategies with the
    purpose of putting the virus in remission and medically stabilize these
    individuals. Many of them are slated to return to work.
        AHF started to make the transition over two years ago from
    exclusive hospices, where individuals who had a prognosis of six months
    or less to live, to adding skilled nursing care. Hospice does not
    attempt to ``cure'' the underlying disease. Instead, it is designed to
    relieve symptoms and pain of the end stage disease, allowing it to
    follow its normal course without an aggressive or interventionist
    approach; therefore concentrating on the quality of life. In HIV,
    however, aggressive anti-viral therapy is many times the best way to
    provide palliative care, as it could enhance quality of life. For
    instance, AZT is considered aggressive therapy as it is an anti-retro
    viral. It is also one of the most effective drugs that penetrate the
    central nervous system and therefore it is utilized to ameliorate
    dementia and relieve symptoms. What we started to see over two years
    ago was that some patients would get better and were ready to be
    discharged but did not have appropriate places to go, with their
    chronic condition, they were too healthy to go an acute hospital-like
    setting, but too fragile and still in need of skilled nursing care for
    a board and care facility. They needed a sub-acute/intermediary type of
    program that would handle their non-acute but chronic condition. The
    choice was expensive hospitalization or board and care living
    arrangements. The first choice was too intensive and the second
    unprepared to handle this level of care. Many times individuals would
    be released to residential facilities, home shelters, or previous home
    situation regardless of availability of home support. This resulted in
    a return to the hospices in much worse shape than when they had left.
    Their situation went from a stabilized chronic condition to that of
    recurrent acute episodes requiring either hospitalization or skilled
    nursing, starting the cycle all over again.
        AHF formalized its intermediary/skilled nursing care program in
    May, 1996 to better serve this growing but unattended population. These
    individuals must show a skilled nursing need and have an estimated life
    expectancy of five years or less. They may need skilled nursing
    intervention such as but not limited to those listed in the skilled
    nursing need section above. Once these individuals are stabilized from
    an acute episode to a relieved or a manageable chronic status, they are
    moved to an appropriate level of care within or outside the AHF system
    of care when available. Many of these individuals are referred from the
    among 3,000 patients presently managed through AHF's outpatient
    healthcare centers. The need has shifted from hospice to skilled
    nursing need. However, the funding sources have not followed this
    shift.
        With the ARV drug monitoring program, AHF is again innovating to
    meet a growing need. The consequences of either not starting
    combination therapy or starting without the appropriate guidance and
    support could be disastrous for the individual and other individuals
    with whom they might have an HIV high risk involvement. There is a
    tremendous fear among healthcare providers that individuals who have
    false starts with anti-retro viral combination therapy may develop a
    resistant strain of the virus, which in essence will make current
    therapies impotent. Furthermore, this strain may be directly passed on
    to an HIV negative person in the usual transmission modes of bodily
    fluids exchanges such as semen, mother's milk, or blood. This newly
    infected person will also be unresponsive to existing anti-retro viral
    therapy. Some providers throughout the nation are beginning to ration
    and deny these medicines to those individuals who have issues with
    compliance and depriving them of these life-saving medicines. We want
    to provide an effective program that can start them off and keep them
    on track with their new drug regimen. A successful program like this
    will result in stabilizing their health and in many cases a return to
    work.
        AHF wants to enhance this model and use it as a demonstration
    project for replication in other areas of the country. Some needed
    upgrades include augmented staff training to keep up with the fast
    developments in HIV medical therapy, facility upgrade to qualify for
    Medicare certification and diversify funding, and equipment enhancement
    to address the multiple needs of this population. The intent of the AHF
    Houses program is to medically rehabilitate individuals who are able to
    go back to less intense level of care or gainful employment once they
    have gone through either the skilled nursing and/or the drug adherence
    programs. AHF believes that some transition funds will go a long way in
    making this program stable and financially feasible once some basic
    infrastructure is in place.
        This proposal requests programmatic funds to finance uncompensated
    care for the first two years of this National Demonstration Project for
    Comprehensive Residential Treatment Facilities for People with HIV/
    AIDS. With this initial funding, AHF expects to continue the financing
    of this program by upgrading its facilities to meet various
    certifications so it could have access to other sources of
    governmental, corporate, foundation and private funding.
    Staffing
        Given the pace of HIV treatment therapy, it is crucial not only to
    have an upgraded facility that meets the needs of licensing and payor
    source agencies, but also the latest training and knowledge. With the
    introduction of protease inhibitors, the field of HIV has become more
    complex than ever. The advent of a newer generation of drugs and
    assessment assays ranging from viral load measurement to tests
    detecting viral resistance to a particular drug by genotyping, will
    only increase demand for providing sophistication. It is a challenge to
    organize all this knowledge and create a systematic program that leads
    to effective training and development. An organized team of staff
    members solely dedicated to this task of on-going training and
    development is very crucial for the success of this program. These
    individuals will also collect and categorize the body of knowledge
    gained through the planning, implementation and evolution of this
    program. This information could be of tremendous value to institutions
    throughout the United States. This component is estimated to cost
    $304,000 for the first year and $315,000 for the second year.
        This uncompensated care is estimated to cost $2,070,850 the first
    year and $872,350 the second year. Both components, the staffing and
    uncompensated care, total $3,568,200 for two years.
        After the re-opening of Chris Brownlie House, AHF will be operating
    66 beds with a total annual budget of $6,830,974. Previous to the
    shifts of population from Hospice to skilled nursing care, in addition
    to Los Angeles County Ryan White Care Act and County net funds, the
    revenue requirements were supplemented by Medi-Cal, Medicare, and
    private insurance payments. Neither of the latter three streams of
    revenue finance skilled nursing or ARV drug monitoring, leaving a
    temporary hole in our budgets until the facilities are upgraded to meet
    skilled nursing Medicare requirements and have the ability to access
    other sources of revenue. AHF estimates a two year period for the
    completion of this process.
                        medicaid managed care initiative
        Managed care programs can provide quality health services and can
    also manage costs for services to HIV infected if such programs are
    designed to provide specialized care. The Committee is aware of efforts
    by the Health Care Financing Administration (HCFA) to respond to
    emerging combination drug therapies which have been credited with
    forestalling the onset of illness and therefore disability among the
    HIV-infected. Demonstration projects extending Medicaid services to
    individuals with HIV who currently do not qualify for Medicaid for lack
    of disability could assist in delaying and even preventing disability
    among individuals who might otherwise develop disability. AHF has
    demonstrated two years of experience in providing such services to the
    disabled in a managed care environment, but is precluded from offering
    such services to the non-disabled, a population which is rapidly
    incurring higher medical costs as a result of promising new treatments.
    AHF will reach out to an estimated 4,000 non-disabled individuals who
    currently are not participating in the existing Medi-Cal AIDS managed
    care program but who would receive a higher level of medical services
    through the continuous quality improvement mechanism in AHF's managed
    care program in a manner which seeks to control increases in costs
    through capitated rates. We hope that the Committee will encourage the
    Health Care Financing Administration (HCFA) to consider a demonstration
    project proposal from AIDS Healthcare Foundation in California for a
    managed care program for persons with HIV who would otherwise not
    qualify for Medicaid services because of lack of disability.
        Thank you for your consideration. I will be happy to answer any
    questions you may have.
                                     ______

    Prepared Statement of Dr. Raymond E. Bye, Jr., Associate Vice President
                     for Research, Florida State University
        Mr. Chairman, thank you and the Members of the Subcommittee for
    this opportunity to present testimony. I would like to take a moment to
    acquaint you with Florida State University. Located in the state
    capitol of Tallahassee, we have been a university since 1950; prior to
    that, we had a long and proud history as a seminary, a college, and a
    women's college. While widely-known for our athletics teams, we have a
    rapidly-emerging reputation as one of the Nation's top public
    universities. Having been designated as a Carnagie Research I
    University several years ago, Florida State University currently
    exceeds $100 million per year in research expenditures. With no
    agricultural nor medical school, few institutions can boast of that
    kind of success. We are strong in both the sciences and the arts. We
    have high quality students; we rank in the top 25 among U. S. colleges
    and universities in attracting National Merit Scholars. Our scientists
    and engineers do excellent research, and they work closely with
    industry to commercialize those results. Florida State ranks seventh
    this year among all U. S. universities in royalties collected from its
    patents and licenses. In short, Florida State University is an exciting
    and rapidly-changing institution.
        Mr. Chairman, last year, Florida State University (FSU) and the
    University of Miami (UM), jointly submitted two collaborative NIH
    projects to this Subcommittee seeking your support. As background, in
    June 1996, the Presidents of FSU and UM signed a unique research and
    education partnership. Two of the areas identified for collaboration
    were risk assessment activities and structural biology and magnetic
    resonance technologies. Last year, this project received strong
    supportive language from your Subcommittee. We greatly appreciate the
    past support for this joint venture and look forward to your continued
    support for our efforts in fiscal year 1998. Let me briefly describe
    these two collaborative projects.
        The FSU/UM Risk Assessment and Intervention Consortium is dedicated
    to reducing the medical and social costs of health care through the
    development of cost efficient, behaviorally effective interventions.
    The Consortium is currently focusing its efforts on two specific
    activities. First, the Consortium is developing strategies to assess
    the access, medication compliance, and transmission risk implication of
    the new antiretroviral protease inhibitor therapies for various HIV
    infected populations. These new therapies represent a major step
    forward in efforts to reduce the onset of AIDS and the incidence of
    AIDS-related mortality. These medications have been effective in
    reducing and regulating viral load in HIV-infected patients to the
    point where many can lead more productive lives. While the advantages
    of these therapies are clear, they also have constraints. First, to be
    effective, patients must adhere to strict and complex treatment
    regimens. Second, although the protease inhibitor therapies are
    effective treatments to prevent the onset of AIDS and reduce and
    control viral load, they do not prevent HIV-infected persons from
    transmitting the virus. The characteristics of many HIV-infected
    persons suggest a difficulty in maintaining compliance. Thus, as health
    is restored, behaviors that could put the individual and others at risk
    must be examined.
        The projects proposed are divided into two phases. The primary
    objectives of phase one are to identify the factors that contribute to
    non-compliance of medication regimens, and to investigate the types and
    frequencies of risk and risk reduction behaviors engaged in by HIV-
    infected persons. The accomplishment of phase one objectives will allow
    our team to move toward the development and testing of further medical
    compliance and risk reductions models in our second phase of this
    project.
        The second area of focus for the Consortium is adolescent substance
    use. Substance use among adolescents is frequently associated with
    other health risk behaviors and has costly long-term implications. Data
    from two recently-released national surveys show that substance use is
    increasing among adolescents, that the age of first use has become
    younger, and that adolescents are increasingly viewing substance use as
    an acceptable behavior. These patterns of behavior and attitude prevail
    across all categories of drugs, and arose after the Drug Abuse
    Resistance Education (DARE) program had been introduced across the
    country. Current trends--coupled with several independent evaluations
    of the DARE program and its lack of theoretical grounding--clearly
    indicate that the DARE program is not an effective intervention
    program. A proposal is being developed which will allow the Consortium
    to develop and test alternative interventions for adolescent substance
    use and associated risk behaviors.
        Funding is being sought for the Risk Assessment and Intervention
    Consortium at the $4 million level for fiscal year 1998 through the
    Department of Health and Human Services.
        Our second SSU-UM collaborative effort involves structural biology
    and magnetic resonance technologies. With this collaboration, the
    universities, along with the National High Magnetic Field Laboratory
    (NHMFL), will initiate a major research and instrumentation effort that
    is built around macromolecular structure and functions--research key to
    drug development, delivery, and aspects of molecular function and
    binding--all of which are critical to many medical areas.
        The FSU/UM collaboration, working closely with the NHMFL, and, with
    the aid of NMR instrumentation, will maximize the vast potential for
    biomedical research, training, and clinical utilization of magnetic
    resonance imaging (MRI), cellular and structural biology, and a broad
    range of other exciting research initiatives. Further, it is our long-
    term intent to establish a national network, where universities
    throughout the United States can benefit.
        To help facilitate a nationwide program, the collaborators will
    first create a State-wide demonstration project, directed at the
    establishment of a high speed data network to support the use of shared
    instrumentation and human resources. This network will provide an
    opportunity to develop and test required human and hardware interfaces
    and protocols critical to the successful implementation such a concept.
    This initiative will serve as a demonstration for a larger network
    linking most universities in the United States to the NHMFL and the
    establishment of a national ``collaoratorium'' for shared
    instrumentation and resources.
        Funding is being sought for this Magnetic Resonance network from
    the National Institutes of Health at the $4 million level for fiscal
    year 1998.
        Having concluded the discussion regarding the FSU/UM
    collaborations, I would like to discuss, FSU's proposed, Rosa Parks
    Institute in Civil Liberties. The purpose of the Institute is to
    develop, produce, and disseminate programs and materials that not only
    highlight diversity but forge positive change in the work and school
    environments. Consistent with the life and works of Mrs. Parks, the
    Institutes' ultimate objective is to assist individuals in realizing
    and achieving their highest potential.
        The Institute will incorporate various projects including the
    following: A leadership development activity that will utilize
    individuals at mid-career who have dedicated their lives to actualizing
    the ideals of positive values at home, school, and the workplace. These
    individuals will become mentors and role models in this effort. Next, a
    university and community collaboration will include working with
    various partners such as civic organizations, educational institutions,
    business, and industry in order to promote educational dialogue
    concerning human rights, organizational, and societal change, and the
    importance of volunteerism. Thirdly, an oral history activity will
    focus on gathering direct personal perspectives from several leaders in
    the civil rights movement on their assessments of our past, present,
    and future with regard to racial diversity. Finally, a distance
    education technology program which will promote cultural diversity
    programs that can be utilized in education and employment settings.
        The Institute will present a broad range of programs comprised of
    short courses and lectures which will be delivered both at the
    Institute and at remote sites around the Nation. New technologies will
    be crucial in the delivery and assessment of the programs. A Website
    Clearinghouse will be established for individuals, schools and
    businesses, around the country, to disseminate information provided by
    the Institute. Further, the Institute will obtain feedback, via the
    website, from participants to evaluate the effectiveness of the
    programs that are offered.
        Funding for the Rosa Parks Institute in Civil Liberties is being
    sought from the U.S. Department of Labor at the $1 million level. Mr.
    Chairman, these activities discussed will make important contributions
    to solving some key problems and concerns we face today. Your support
    would be appreciated. And, again, thank you for the opportunity to
    present these views for your consideration.
                                     ______

         Prepared Statement of Cyrus M. Jollivette, Vice President for
                   Government Relations, University of Miami
        Mr. Chairman and Members of the Subcommittee: I appreciate the
    opportunity to present testimony on behalf of the University of Miami
    and Florida State University. Both of the institutions which I
    represent today are deeply appreciative of your leadership, Mr.
    Chairman, and the Subcommittee's confidence. At no time in the past
    have you and your colleagues on the Committee on Appropriations faced
    more difficult constraints. Yet I am certain that you will continue to
    make the difficult choices with the best interests of the nation
    guiding your decisions. My colleagues and I hope that you will find it
    possible to fund the important initiatives in fiscal year 1998 detailed
    below.
        First, the University of Miami has embarked on the construction of
    one of the major children's research facilities in the nation, a state-
    of-the art research building to house all basic and clinical research
    for the Department of Pediatrics in the University of Miami/Jackson
    Memorial Medical Center. The goals and mission of the facility are for
    the benefit of the children of Florida and the nation. We seek to
    create a children's clinical and basic research center of unmatched
    excellence, to facilitate consolidated, coordinated, interdisciplinary
    research efforts in pediatrics, and to study, treat, and ultimately
    cure childhood diseases.
        Through the Department of Health and Human Services, the University
    seeks a $5 million project grant which will be leveraged with $40
    million in private contributions to construct a state-of-the-art
    pediatric research facility in Miami's urban core.
        The $45 million facility will contain 145,000 square feet. The
    facility will contain outpatient research facilities for broad ranging
    clinical investigations including AIDS, cystic fibrosis, asthma, other
    lung problems, genetics, behavioral sciences, gastroenterology,
    endocrinology, critical care, neonatology, maternal lifestyles (and
    their effects on children), clinical research in Touch and many others.
        Major space will be allocated for parent/patient education, in
    addition to extensive education programs of medical students, house-
    staff, and fellows in all areas of pediatric medicine. State-of-the-art
    laboratories are planned for cardiology, critical care, cancer,
    endocrinology, gastroenterology, neuromuscular genetics, infectious
    diseases/immunology, AIDS, pharmacology/toxicology, neonatal, pulmonary
    (asthma and cystic fibrosis), core facilities, shared research, and a
    vivarium.
        The University of Miami Environmental Health Sciences Center has
    two themes: Marine Toxins and Dietary Risk, and Marine Models of Human
    Disease. Center programs are well developed, and successful Pilot
    Projects continue to fuel the increase in interdisciplinary
    productivity. Facilities Cores provide standardized marine toxins,
    aquacultured marine organisms as models, an experimental manipulations
    core of sophisticated analytical and molecular technology, and
    electrophysiology. Two Research Cores provide for interactive research
    and discussion, and for development and implementation of new research
    and education programs.
        Within the Marine Toxins and Dietary Risk research area, research
    interests span the five types of marine toxins and draw on the
    expertise of 6 investigators in molecular enzymology, ligand (toxin)--
    receptor (ion channel, enzyme, or chemoreceptor) interactions, orphan
    receptor biochemistry, molecular pharmacology, electrophysiology, site
    mutagenesis, organic chemistry, computer simulation, and molecular
    modeling. The ultimate goal is to define each intoxication syndrome at
    the molecular level, and develop diagnostics and therapies. With the
    advent of Hazard Analysis Critical Control Point (HACCP) Programs,
    which require certification of seafood as being safe for consumption,
    the mechanisms we discover and the tests we develop will provide a
    science-based solution to an increasing human health hazard.
        The Center has been designated by NIH as a national resource for
    the high quality toxin standards it produces, and for the molecular
    toxin probes it has used to describe the molecular aspects of toxin
    action. The toxins under study represent some of the most potent
    pharmacological agents known. Of six classes of toxins, four interact
    with voltage-gated sodium channels, one interacts with mammalian
    protein phosphatases, one binds to central nervous system glutamate
    receptors, and all are effective in the nanomolar to picomolar
    concentration ranges. It is a long-standing goal of several Center
    investigators to use collaborative studies to unravel the biophysical
    aspects of toxin action, and to describe their deleterious effects on
    humans.
        The Marine Models of Human Disease component involves 7 faculty.
    The systems they study include: model systems of Damsel Fish for Human
    Neurofibromatosis (NF1); Aplysia as models for developmental
    neurotoxicology (currently used as models for memory and learning) and
    as a general model of neurotransmission and synaptic transmission; and
    immune function in damselfish and in sharks, and transgenic research in
    zebrafish to study enzyme induction. Non-mammalian models have proved
    invaluable in studies of memory and learning, neurophysiology, and
    cancer. Development of marine species as models of human disease
    require tight integration of basic physiology and biochemistry with
    ecology and animal life history. The use of marine animals in research
    reduces the use of higher warm-blooded vertebrates, and provides
    systems for study that can address issues of cancer, liver disease,
    neurdegenerative disorders, and maladies of the immune system.
        The Center provides a national resource for the culture of Aplysia,
    an excellent invertebrate model of memory and learning. Through the
    further development of this model, Center investigators have the unique
    opportunity to provide a new mechanism for studying developmental
    learning disabilities, neurotoxicology, and deficiencies of memory like
    Alzheimer's disease.
        What we propose is fundamentally different, and is based on a model
    of integrated `crossover-training'. We propose to support postdoctoral
    students for up to three years. The trainees will be principally
    located within one department, but will address ongoing,
    interdisciplinary problems through their selected paired investigators
    and through Center interaction. Trainees may take formal courses as
    non-degree students and attend seminars in their home and secondary
    departments to broaden their background, but the principal training
    will be at-the-bench.
        Interdisciplinary training will not weaken their knowledge of their
    primary discipline; on the contrary, it will broaden it by bringing new
    ideas and new ways of thinking into the mind of the trainee. Such
    individuals will then enter the workforce (academic, government, or
    industry) with a unique spectrum of interdisciplinary training that
    equips them to undertake a broader spectrum of problems and to interact
    with a wider range of colleagues than more traditionally schooled
    graduates.
        Within the context of research, we believe the research aspects
    that deal with the interdependence of scientists in studying a common
    set of problems would provide the most efficient use of funds. That is
    to say, those investigators who can provide (or appreciate) a variety
    of viewpoints towards solving public health problems are most valuable
    to Society. The marine seafood toxins problem provides an ideal avenue
    for such interaction and delivery of a useful set of ``products'' to
    the consuming public. These ``products'' are returned to the taxpayer
    in the form of toxin test kits that can be used by industry to
    accurately identify potential human health hazards in seafood while at
    the same time protecting the industry from litigation; toxin tools that
    can be used in diagnostic and clinical settings; trained
    interdisciplinary scientists and physicians who can provide a holistic
    approach to human health and who can provide the science-based
    leadership and advice to industry, academia, congress, and the public;
    research aimed at providing the molecular mechanism of the toxins,
    thereby instigating the development of therapies and potential new
    drugs. The University seeks $3 million to support this initiative.
        Next, through the Department Health and Human Services, the
    University seeks to establish a Diabetes Research Center to marshall
    the expertise and resources in diabetes, immunology, transplantation,
    and of the closely affiliated Miami VA Medical Center, Jackson Memorial
    Hospital, and the University of Miami School of Medicine's Diabetes
    Research Center.
        This partnership in one of the nation's largest academic medical
    centers will contribute greatly to the enhancement of diabetes care at
    the Miami VA Medical Center and stimulate and facilitate
    multidisciplinary research in diabetes at the Diabetes Research Center.
    The VA/JMH/UM Medical Center is the only tertiary care academic medical
    center in South Florida, with a patient catchment area embracing more
    than 5 million people, as well as a large and growing number of
    referrals from outside the region.
        The University of Miami's International Center for Health Research
    is dedicated to improving controls on the emergence and migration of
    infectious diseases. The incidence of emerging and re-emerging
    infectious diseases has dramatically increased within the past two
    decades. The United States is vulnerable to these emerging and re-
    emerging diseases as evidenced by the advent of the HIV virus, and
    resurgence of tuberculosis, particularly in densely populated areas,
    and among ethnic minorities. Other infectious diseases have emerged,
    including malaria, dengue, and cholera. Introduction of these diseases
    into the United States is enhanced by increased air travel and
    migration among the countries of the Western Hemisphere, particularly
    from Latin America and the Caribbean.
        Over the past year we have seen significant interest in early brain
    development and the importance of the early years in the lives of
    America's children. It is now well known, even to lay audiences, that
    the brains of children continue to develop after birth and the
    development is dependent to a large extent, on the early experiences of
    children. Parents can shape those early experiences and make a
    difference in their children's development. For many of America's
    children born with significant risk factors already associated wit poor
    school-related outcomes, this means they will fail to arrive at school
    ready to learn. Unfortunately, with less than 36 months remaining until
    the year 2000, we gave done little to meet the number one National
    Education Goals, established by the President and all 50 state
    Governors, which was: ``By the year 2000, all children in America will
    start school ready to learn.''
        The Centers for Disease Control and Prevention sees the prevention
    of mental retardation and school failure as an important goal for the
    future and wants to focus some of their energies on this topic. To this
    end they are interested in identifying the most cost effective means of
    providing early intervention to children who are likely to be at risk
    for these problems. The University of Miami has done several important
    studies that hold promise for effective outcomes with this population--
    for example, our recent work with children born to teenage mothers. Our
    findings demonstrated that short-term, cost effective intervention is
    possible and can have a significant impact on child outcomes. We
    encourage support of the budget and programs proposed by the Centers
    for Disease Control and Prevention as in turn, these will benefit all
    our nation's children, and particularly those who reside in Florida's
    urban and rural areas.
        As background, in June 1996, the Presidents of Florida State and
    Miami formalized a unique research and education partnership. Two of
    the areas identified for collaboration were risk assessment activities
    and structural biology and magnetic resonance technologies. Last year,
    our collaboration received supportive language from your Subcommittee.
    We greatly appreciate the past support for this joint venture and look
    forward to your continued support for our efforts in fiscal year 1998.
    Let me briefly describe these two collaborative projects.
        The UM/FSU Risk Assessment and Intervention Consortium is dedicated
    to reducing the medical and social costs of health care through
    development of cost efficient, behaviorally effective interventions.
    The Consortium is currently focusing its efforts on two specific
    activities. First, the Consortium is developing strategies to assess,
    the access, medication compliance, and transmission risk implication of
    the new antiretroviral protease inhibitor therapies for various HIV
    infected populations. These new therapies represent a major step
    forward in efforts to reduce the onset of AIDS ad the incidence of
    AIDS-related mortality. These medications have been effective in
    reducing and regulating viral load in HIV-infected patients to the
    point where many can lead more productive lives. While the advantages
    of these therapies are clear, they also have constraints. First, to be
    effective, patients must adhere to strict and complex treatment
    regimens. Second, although the protease inhibitor therapies are
    effective treatments to prevent the onset of AIDS and reduce and
    control viral load, they do not prevent HIV-infected persons from
    transmitting the virus. The characteristics of many HIV-infected
    persons suggest a difficulty in maintaining compliance. Thus, as health
    is restored, behaviors that could put the individual and others at risk
    must be examined.
        The projects proposed are divided into two phases. The primary
    objectives of phase one are to identify the factors that contribute to
    non-compliance of medication regimens, and to investigate the types and
    frequencies of risk and risk reduction behaviors engaged in by HIV-
    infected persons. The accomplishment of phase one objectives will allow
    our team to move forward the development and testing of further medical
    compliance and risk reductions models in our second phase of this
    project.
        The second area of focus for the Consortium is adolescent substance
    use. Substance use among adolescents is frequently associated with
    other health risk behaviors and has costly long-term implications. Data
    from two recently-released national surveys show that substance use is
    increasing among adolescents, that the age of first use has become
    younger, and that adolescents are increasingly viewing substance as an
    acceptable behavior. These patterns of behavior and attitude prevail
    across all categories of drugs, and arose after the Drug Abuse
    Resistance Education (DARE) program had been introduced across the
    country. Current trends--coupled with several independent evaluations
    of the DARE program and its lack of theoretical grounding--clearly
    indicate that the DARE program is not an effective intervention
    program. A proposal is being developed which will allow the Consortium
    to develop and test alternative interventions for adolescent substance
    use and associated risk behaviors.
        Funding is being sought for the Risk Assessment and Intervention
    Consortium at the $4 million level for fiscal year 1998 through the
    Centers for Disease Control and Prevention.
        The second UM-FSU collaborative effort involves structural biology
    and magnetic resonance technologies. With this collaboration, our two
    universities, along with the National High Magnetic Field Laboratory
    (NHMFL), will initiate a major research and instrumentation effort that
    is built around macromolecular structure and functions--research key to
    drug development, delivery, and aspects of molecular function and
    binding--all of which are critical to many medical areas.
        The UM/FSU collaboration, working closely with the NHMFL, and, with
    the aid of NMR instrumentation, will maximize the vast potential for
    biomedical research, training, and clinical utilization of magnetic
    resonance imaging (MRI), cellular and structural biology, and a broad
    range of other exciting research initiatives. Further, it is our long-
    term intent to establish a national network, where universities
    throughout the Unites States can benefit.
        To help facilitate a nationwide program, the collaborators will
    first create a state-wide demonstration project, directed at the
    establishment of a high speed data network to support the use of shared
    instrumentation and human resources. This network will provide an
    opportunity to develop and test required human and hardware interfaces
    and protocols critical to the successful implementation of such a
    concept. This initiative will serve as a demonstration for a larger
    network linking most universities in the United States to NHMFL and the
    establishment of a national ``collaoratorium'' for shared
    instrumentation and resources. We seek funding for this Magnetic
    Resonance network at the $4 million level for fiscal year 1998 through
    the National Science Foundation.
        Mr. Chairman, my colleagues and I know what a difficult
    appropriations year you face. However, again, we respectfully request
    that you give very serious consideration to these projects so that the
    research progress already made is not lost. In the long-term, these
    national investments will provide continuing dividends in our mutual
    search for cost-effective solutions for the nation's problems.
                                     ______

    Prepared Statement of Joe L. Mauderly, Senior Scientist and Director of
           External Affairs, Lovelace Respiratory Research Institute
        It is proposed that the Department of Health and Human Services
    (HHS) play a participatory role in an interagency effort to establish
    and maintain a National Environmental Respiratory Center for the
    purpose of integrating research and information transfer concerning
    health risks of breathing airborne contaminants in the environment. The
    support of HHS through NIH, NIEHS, and CDC/NIOSH for the Center's
    research is requested, along with support from other Agencies, to
    fulfill its mandate for understanding and mitigating disease and health
    risks from occupational and environmental, exposures to toxic agents.
                  the environmental respiratory health dilemma
    U.S. Health Burden of Respiratory Disease
        The magnitude of the national health burden caused by respiratory
    diseases is not widely appreciated. These diseases now kill one out of
    four Americans. Among cancers, the second leading cause of death, lung
    cancer is the single largest killer. Nearly 195 thousand new cases of
    respiratory tract cancer will be diagnosed this year, and 166 thousand
    Americans will die from these cancers. Lung cancer kills more than
    twice as many women as breast cancer, and more than twice as many men
    as prostate cancer. Pneumonia and heart-lung failure are the terminal
    conditions for many of our elderly. Excluding cancer, chronic
    respiratory diseases and pneumonia are the third leading cause of death
    in the U.S., killing over 188 thousand Americans in 1995. Asthma,
    growing unaccountably in recent decades, now afflicts 15 million
    Americans, including 5 million children. The incidence of asthma
    increased 61 percent between 1982 and 1994, and asthma deaths among
    children nearly doubled between 1980 and 1993. Viral respiratory
    infections are the most common cause of hospitalization of infants and
    cause a tremendous loss of productivity in the adult workforce.
    Occupational lung disease is the number one work-related illness in the
    U.S. in terms of frequency, severity, and degree of ``preventability''.
    Worldwide, three times more people die from tuberculosis than from
    AIDS.
    Critical Uncertainties Regarding Contributions of Airborne
            Environmental Contaminants
        Pollutants inhaled in the environment, workplace, and home are
    known to aggravate asthma and contribute to respiratory illness, but
    the extent of their role in causing respiratory disease is not clear.
    It is known that it is possible for airborne irritants, toxins,
    allergens, carcinogens, and infectious agents to cause cancer,
    degenerative disease, and infections directly, or indirectly through
    reduction of normal defenses, but the portion of such diseases caused
    by, or strongly influenced by, pollution is uncertain.
        We are repeatedly faced with estimating the health effects of
    environmental air pollution on the basis of very limited information
    and in the presence of large uncertainty. For example, environmental
    radon gas is estimated to be the second leading cause of lung cancer
    (after smoking), but this estimate comes from our experience with
    uranium mining, in which the exposure conditions and exposed population
    were quite different from those in the general environment. As another
    current example, it is estimated that as many as 40 thousand Americans
    may die annually from breathing particulate erivironmental air
    pollution, but this estimate comes from epidemiological data that do
    not provide a clear understanding of individuals who were affected, the
    nature and magnitude of their exposure, the biological processes by
    which death might have occurred, or the extent to which the effects of
    particles were independent of other pollutants.
        It is difficult to associate health effects with specific pollutant
    sources. Most environmental air contaminants have multiple sources
    which produce species of overlapping, but slightly different physical-
    chemical types. There are few biological markers of exposure which can
    be used to link health effects to past exposures to pollutant classes,
    much less to specific pollutants and sources. This makes it very
    difficult to associate specific pollutant species with specific health
    effects, identify and prioritize the sources whose management would
    most efficiently reduce the effects, and compare potential health gains
    to the financial, technological, and lifestyle commitments required to
    achieve them.
        We presently have little scientific or regulatory ability to deal
    with pollutant mixtures. It is recognized that all exposures to air
    pollutants involve inhalation of complex mixtures of materials, but
    there is very little research on the health effects of mixtures, or the
    significance of interactions among combined or sequential exposures to
    multiple pollutants. Air quality regulations address individual
    contaminants, or contaminant classes, one at a time. We know that
    multiple pollutants can cause common effects, such as inflammation. We
    know that some pollutants can amplify the effects of others. We can
    presume that a mixture of pollutants, each within its acceptable
    concentration, could present an unacceptable aggregate health risk. We
    face the possibility that a pollutant occurring in a mixture might
    wrongly be assigned sole responsibility for a health effect that, in
    fact, results from the mixture or an unrecognized copollutant that
    varies in concert with the accused species. The mixture issue will
    become increasingly important as pollutant levels are pushed ever
    lower, and needs coordinated, interdisciplinary attention.
        As air pollutant levels are reduced, the problems of correctly
    linking health effects to the correct species and sources, and of
    making difficult cost-benefit judgments, will increase. The levels of
    many environmental air contaminants have decreased due to technological
    developments and regulatory pressures. For example, between 1985 and
    1995, concentrations of airborne lead, sulfur dioxide, and carbon
    monoxide in the U.S. decreased 32 percent, 18 percent, and 16 percent,
    respectively, and levels of airborne particulate matter decreased 22
    percent between 1988 and 1995. Levels of ozone and other pollutants
    have also decreased. As background levels are approached, decisions
    regarding: (a) the benefits of further reductions in man-made
    pollution; (b) the need to consider pollutants as a mixture rather than
    as individual species; and, (c) the point at which small biological
    changes represent health effects warranting control, will become more
    difficult and will require more focused, coordinated research.
        We are repeatedly faced with estimating effects in particularly
    sensitive or susceptible subpopulations. For example, the proposed new
    National Ambient Air Quality Standards for ozone and particulate matter
    are driven largely by effects thought to occur in exercising asthmatics
    and elderly people with heart-lung disease, respectively. It is seldom
    appropriate to conduct studies in which adverse effects are
    intentionally elicited in the most sensitive people. Until recently,
    there has been little emphasis on developing laboratory animal models
    of human heart-lung conditions thought to render people susceptible to-
    pollutants. More emphasis needs to be given to developing and
    validating these research tools, and to coordinating such efforts
    across agencies and research disciplines.
        HHS and other agencies repeatedly face uncertainties regarding the
    relevance of laboratory results to human health risks. As one of
    several examples, uncertainties about the relevance of the lung tumor
    response of rats to inhaled particles to human lung cancer risk has
    complicated hazard identification and risk assessment activities. Much
    of our understanding of the toxicity of inhaled airborne materials
    comes from studies using animals and cells to identify toxic agents,
    understand biological responses, and determine relationships between
    dose and effect. Such studies produce detailed information on the
    response of animals or cells, but there is too little emphasis on
    ensuring that the responses are similar to those that occur in humans.
    Development of information having little relevance to humans wastes
    resources. The validation of responses of animals and cells used to
    provide the scientific basis for national energy and environmental
    policies needs to be given greater emphasis and coordination.
    Lack of Interagency and lnterdisciplinary Coordination
        HHS does not have the mandate or resources to resolve all of these
    interrelated issues alone; the resources of other agencies and non-
    federal sponsors are critical. Current efforts are funded by HHS and
    other agencies, including DOE, EPA, FDA, DOD, and by health advocacy
    organizations, industry, labor, and private foundations. Existing
    coordinating activities within and among these groups do not provide
    sufficient integration and synergism. Progress will require a wide
    range of laboratory researchers, atmospheric scientists,
    epidemiologists, and clinical researchers. Focusing and resolving the
    issues will require interactions among researchers, health care
    professionals, and policy makers in an iterative manner that fosters
    rapid information transfer and development of joint investigative
    strategies. There is no mechanism for national coordination of this
    interagency and interdisciplinary effort. As a result, some efforts are
    duplicated and some important issues are being inadequately addressed.
    The lack of a national center for focusing and facilitating this effort
    will increasingly create inefficiencies and impede progress.
        There is no national center for collecting and disseminating
    information on the health impacts of airborne environmental
    contaminants. Researchers, federal agencies, congress, industry, and
    the public do not have a centralized source of information on ongoing
    research or recent findings.
        There is no designated national interagency user facility with the
    specialized facilities, equipment, core support, and professional
    collaboration required for many types of investigations to study the
    complex airborne materials and health responses of concern. HHS
    provides specialized user facilities, and Investigators seek access to
    these other laboratories on an individual basis, but there is no
    coordinated national effort to facilitate the work of investigators in
    universities, federal laboratories, and industry by identifying and
    providing shared resources or standardized samples.
        HHS and other agencies have intra-agency research centers and
    administrative structures that serve internal programmatic coordination
    needs, but these efforts rarely extend across agency lines. HHS funds
    laboratories and universities, and other agencies also fund extramural
    centers to study, or facilitate the study, of specific issues related
    to environmental respiratory health. For example, EPA's Mickey Leland
    National Urban Air Toxics Research Center funds research and
    information transfer on the class of compounds designated in the Clean
    Air Act as ``air tonics''. The Leland Center serves a useful
    coordinating and research sponsorship function for air tonics, but does
    not have the facility or scientific resources to meet the broader needs
    described above. NIEHS center grants at universities provide core
    support and coordinating functions for thematic collections of projects
    on occupational and environmental health, but again, are not suited to
    meeting the broader needs.
        The lack of a national coordinating center is notable, considering
    its small cost compared to the loss of productivity, the reduction in
    quality of life, and the loss of life caused by respiratory diseases
    and considering the importance now ascribed to the role of
    environmental factors in respiratory disease.
              the national environmental respiratory center (nerc)
    Location and Staffing
        The Lovelace Respiratory Research Institute (LRRI) proposes to
    establish a national center to meet the coordinating, user facility,
    and information needs described above. The physical location of the
    NERC will be the government-owned Inhalation Toxicology Research
    Institute facility on Kirtland AFB in Albuquerque, NM. This facility is
    already developed at taxpayer expense, having been established by the
    DOE to conduct research on long-term health risks from inhaled
    radioactive particles. Having fulfilled that mission, the facility was
    recently released from DOE laboratory status, and is now leased by LRRI
    to conduct respiratory health research for federal agencies, industry,
    and private sponsors. This 270,000 square foot, world-class facility
    contains $50 million in government-owned equipment, and has unmatched
    potential as a national user facility. The facility is well equipped
    and staffed for intramural and collaborative research on airborne
    materials of all types, including reproducing pollutant atmospheres,
    conducting inhalation exposures of animals, determining the dosimetry
    of inhaled materials, and evaluating health effects ranging from subtle
    genetic and biochemical changes to clinical expression of disease.
        The interests and expertise of LRRI are well-matched to the
    proposed activities of the Center. While managing the facility for DOE,
    LRRI contributed heavily to our present understanding of the
    respiratory health impacts of airborne pollutants. LRRI has contributed
    heavily to the research cited as scientific basis for air quality
    regulations and worker protection standards. The group is well-known
    for its efforts to understand airborne materials, link basic cellular
    and tissue responses to the development of disease, validate the human
    relevance of laboratory findings, and coordinate complex
    interdisciplinary studies. The LRRI group has conducted the world's
    most extensive research program on the effects of combined and
    sequential exposures to multiple toxicants. The group is well-known for
    its participation in HHS and other advisory roles, and for coordinating
    multidisciplinary and interinstitutional efforts.
        LRRI envisions a ``virtual center'' that will also encompass nearby
    institutions and an expanding group of collaborating investigators
    nationwide. Academic affiliation with the University of New Mexico,
    primarily through its Health Sciences Center will extend research and
    training capabilities. Other local technology and collaborative
    resources include Sandia and Los Alamos National Laboratories, the
    National Center for Genome Resources, and the growing New Mexico
    biotechnology and clinical research communities. The NERC would
    interact closely with the Leland Center and with intramural research
    centers within EPA and other agencies.
    Principal Functions
        Provide information resources.--The Center will provide centralized
    information resources to researchers, HHS and other agencies, congress,
    industry, and the public. Literature searches, topical summaries, and
    answers to specific inquiries will be provided via the internet,
    electronic mail, and telephone. Emphasis will be given to providing
    access to relevant information nationwide through a single point of
    contact and assistance.
        Facilitate interagency and interinstitutional coordination.--The
    Center will coordinate meetings, workshops, information transfer, and
    other activities aimed at integrating and prioritizing national
    research efforts and integrating results into useful summaries.
        Provide user facilities and facilitate access to research
    resources.--The Center will disseminate information on the availability
    of specialized facilities, equipment, collaborative resources, and
    samples at the Center and elsewhere, and will facilitate the use of
    these resources by researchers in other institutions.
        Provide training.--The Center will provide graduate training
    through the Toxicology, Biomedical, and Public Health programs at the
    University of New Mexico, and by hosting thesis research from other
    universities. Postdoctoral and sabbatical appointments will also be
    provided. Workshops and training courses will be conducted.
        Conduct and sponsor research.--While it is envisioned that limited
    intramural research will be conducted with Center funding, intramural
    research will be principally funded by direct sponsorship of Agencies,
    industry, and the public through grants, contracts, and donations.
    Through the Center, extramural research aimed at critical information
    gaps not addressed by other sponsors will be funded.
            funding of the national environmental respiratory center
        LRRI seeks authorization and subsequent appropriations through a
    lead agency for core funding, with complementary sponsorship through
    grants and contracts from HHS and other agencies for research aligned
    with individual agency mandates and strategic goals.
        An initial appropriation of $2 million per year for 5 years,
    beginning in fiscal year 1998, will establish the Center and its core
    information, educational, and administrative functions. This amount
    will provide for critical computing and communication infrastructure,
    and limited facility renovations and equipment acquisitions. This
    amount will provide very little intramural or extramural research
    support; additional support for these purposes will be sought in
    coordination with the lead sponsoring agency as the Center is
    established. The goal is to develop research support principally
    through sponsored programs, and to use the core Center support
    principally to provide coordinating and information services and
    sponsor limited collaborative research.
        Support is sought from HHS through funding of related, independent
    research programs having special relevance to HHS' mission, and through
    such participatory support of the Center's core functions as
    established on an interagency basis.
                                     ______

      Prepared Statement of the Organizations of Academic Family Medicine
        Mr. Chairman, this statement is on behalf of the listed academic
    family medicine organizations in support of critical funding of family
    medicine training programs and research. Mr. Chairman, you and your
    committee have been extremely supportive of family medicine training
    programs in the past. We appreciate how difficult this past year has
    been for the committee and thank you for your continued support of our
    training programs. We know the fiscal year 1997 appropriations process
    will be just as difficult, with extremely hard choices. We ask that you
    continue to value the family medicine training programs under Title VII
    as federal funds targeted where they can do the most good. We believe
    that the small amount of funding spent on Section 747, family medicine
    training, is money well spent. It is money that achieves its purpose--
    the production of generalist physicians, and ones who serve in rural
    and urban underserved areas. Moreover, this funding sows the seeds for
    a more cost-effective utilization of health care dollars in the future.
        The organizations of academic family medicine ask this committee to
    support these programs at a new authorized and appropriated level of
    $87 million for Section 747, family medicine training. Section 747
    family medicine training funds are used to help develop and maintain an
    infrastructure for the production of family physicians. Funding is used
    for the establishment of departments of family medicine within medical
    schools, the development of third-year clerkships in family medicine
    for medical students, the training of family practice residents, and
    development of teaching and education skills for family medicine
    faculty.
        There is good justification for this funding level. Our
    recommendation would provide funds for 60 new residency training
    programs, 15 new departments, 51 additional predoctoral programs, 900
    new faculty and a number of collaborative demonstration projects. This
    recommendation is the result of a strategic plan for the future needs
    of family medicine developed by the Academic Family Medicine
    Organizations, which is represented by all five family medicine
    organizations. At the very least, we require the current fiscal year
    1997 level of $49.3 million for family medicine training plus
    inflation, (within a combined authority of $302 million for all health
    professions programs), to maintain the production of needed family
    physicians.
    How Do We Know This Title VII Money Is Well Spent?
        Two Government Accounting Office (GAO), reports have addressed this
    question. A July 1994 report, states that ``the programs were important
    for funding innovative projects and providing ``seed money'' for
    starting new programs. For example, Title VII was considered important
    in the creation and maintenance of family medicine departments and
    divisions in medical schools * * *'' (GAO/HEHS-94-164).
        The GAO, in another, more recent report, states in October 1994,
    that ``students who attended schools with family practice departments
    were 57 percent more likely to pursue primary care.'' In addition, the
    report goes on to say that ``students attending medical schools with
    more highly funded family practice departments were 18 percent more
    likely to pursue primary care and students attending schools requiring
    a third-year family practice clerkship were [also] 18 percent more
    likely to pursue primary care.'' The money spent on Section 747 of
    Title VII is directly targeted in these areas. (GAO/HEHS-95-9)
        Title VII has helped build much needed family medicine training
    capacity and quality. Here are just a few examples that illustrate the
    importance of these programs:
        Boston University (predoctoral and department establishment
    grants).--A predoctoral grant over the last two years led to a major
    increase in programming associated with AHECs and community-based
    physicians. The grant had the effect of doubling class size of students
    going into family practice this year. This 100 percent increase made
    family practice the 2nd most popular career choice; up from 10th a year
    ago. Most importantly it resulted in the adoption of a required third-
    year clerkship in family practice; something the GAO found increased
    the choice of primary care careers by 18 percent. Boston University
    found the Department development grant to be critical in providing the
    groundwork for the successful initiation of a department of family
    medicine at the medical school, and attracting a highly regarded
    physician to chair the new department. The mission statement of the new
    department is directed toward education, research, and service to the
    underserved.
        University of North Carolina at Chapel Hill (residency grants).--A
    series of residency grants to the University of North Carolina
    Department of Family Medicine has produced an impact on the institution
    and the surrounding health care system that would have been impossible
    without these grants. A grant-supported rural rotation, with practicing
    rural physicians as teachers, has led to rural preceptors taking care
    of their own patients in the university hospital on the Family Medicine
    service and participating in resident evaluation. These working
    relationships formed the essential groundwork for new joint initiatives
    now underway to develop a small-town birthing center and rural
    residency track. These grant-supported curricula also allowed us to
    leverage resources, such as links to the university medical center's
    clinical information system, from the medical center to local community
    health centers. As a result, the impact of the training grants has
    extended well beyond their initial scope. More importantly, the
    percentage of residents going to underserved areas after graduation
    increased from an occasional graduate to over 50 percent (1995).
        University of Utah, (predoctoral education).-- The infusion of
    federal training funds for predoctoral education in family medicine
    facilitated the final approval for a required third-year clerkship in
    family medicine. Without this support, this program would have been
    further delayed by several years. The third-year clerkship has clearly
    had an effect on student career choice. In the words of a third-year
    medical student who had just finished the four week experience in a
    rural site:

              ``This experience has ruined my life * * * I came to medical
            school with no interest in family practice and had made a
            decision about a career choice. But this experience was so
            outstanding that I can't imagine any other career path but
            family medicine. I know the deadline has passed to apply for
            the senior Student Honors Program in Family Medicine (which is
            also supported by the Title VII predoctoral training grant) but
            do you think I could get admitted.''

    Why is a continued and enhanced federal role necessary?
        Simply put, now is not the time to withdraw life-line funding from
    programs that are successfully meeting and achieving federal policy
    goals. America needs family physicians to provide care to all
    individuals, from cradle to grave, in all areas of the country, in a
    cost-effective, high-quality manner.
        The Consensus Statement on the Physician Workforce \1\ states that
    ``It is likely that many traditionally underserved communities will
    continue to have an inadequate number of physicians, particularly
    generalist physicians [emphasis added], to meet the needs of the
    population.'' The statement goes on to request that federal funds be
    provided to increase medical school student experiences in rural and
    inner city communities, and to call for ``federal incentives to
    encourage students to pursue careers as generalist physicians and to
    establish practices in these communities.''
    ---------------------------------------------------------------------------
        \1\ American Association of Colleges of Osteopathic Medicine,
    American Medical Association, American Osteopathic Association,
    Association of Academic Health Centers, Association of American Medical
    Colleges, National Medical Association.
    ---------------------------------------------------------------------------
        Although the need is great, the federal government has instituted
    conflicting incentives that have made it fiscally difficult to develop
    a family medicine infrastructure. Medicare reimbursement rates for
    procedural services, Medicare reimbursement for graduate medical
    education in a hospital setting, and the more than $10 billion a year
    spent on NIH research all serve to induce the academic medical
    environment to produce significantly more subspecialists than primary
    care physicians. Given the current state of federal incentives, market
    forces alone are not enough to bring about the necessary changes in the
    time-frame needed. There is ample evidence of a tremendous unmet need
    for family physicians and other primary care physicians. The Physician
    Payment Review Commission, the Council on Graduate Medical Education,
    the American Medical Association and the Association of American
    Medical Colleges all advocate increasing the supply of generalist
    physicians. Now is not the time to dilute, or diminish, the only
    federal program designed to produce more family physicians.
        Eighty percent of family practice residency programs are located in
    community hospitals, half of which have no other specialty residency.
    This is a key reason family medicine produces physicians who practice
    in all areas of the country, but also one of the reasons there is not a
    great deal of outside funding available to these programs. This is
    especially true because Medicare does not reimburse hospitals for
    graduate medical education (GME) training that occurs in the ambulatory
    setting--the hallmark of family medicine residency training. Not only
    does Medicare GME not reimburse programs for such training, but this
    type of training is more labor-intensive and more expensive than in-
    hospital training.
    Title VII family practice training funds are directly targeted to those
            programs producing graduates to serve in rural and urban
            underserved areas.
        Studies underway within HRSA (personal communication, Mar. 1997)
    indicate that if current levels of physicians in training for family
    practice continue, we will see an increase in the number of rural and
    urban family physicians by one third in the next decade. Family
    physicians are at least three times as likely as other generalists to
    locate in rural areas.
        Currently half of the U.S. rural counties are shortage areas. We
    have approximately 35 family physicians per 100,000 people in rural
    areas. By the end of the next decade we expect to have 50 family
    physicians per 100,000 individuals, in rural America. This will go a
    long way toward alleviating current rural physician shortages, but is
    dependent upon future funding of family practice training programs.
    The need for support for faculty in family practice training
        The need for more faculty in family medicine departments of medical
    schools and residency programs, and the training of these faculty to be
    teachers, are key challenges currently facing our discipline.
    Currently, departments and third-year clerkships all over the nation
    are operating on less than full staff. Faculty in charge of predoctoral
    and other departmental activities are uniformly spread too thin and
    face burnout and exhaustion, while chairs and program directors
    scramble for additional faculty. When new hires are made, they are
    typically assigned to clinical work, not to academic or teaching
    responsibilities. Despite the challenges which these dedicated faculty
    face, their efforts are beginning to pay off in the increasing numbers
    of students who are experiencing family medicine clerkships and
    choosing family practice residency training. As we face the social and
    political pressures to produce more family physicians, faculty
    development is needed more keenly now than ever before to help recruit
    and train new faculty.
        A survey study conducted in early 1994 by the Academic Family
    Medicine Organizations Steering Committee (AFMO) Family Medicine,
    February 1995) demonstrated a need for approximately 1,173 new family
    medicine faculty by late 1995. The authors found that family medicine
    is virtually the only discipline which needs new faculty, and commented
    that these new academicians must be ``equipped with the necessary tools
    to build a successful academic career.'' A recent national survey of
    family medicine departments and residency programs shows that nearly
    500 departmental and residency positions were unfilled in 1994, and
    that 700 faculty would be needed in the next two years. (Fam. Med.
    1995; 27: 98-102). This situation is even more dire since we are
    experiencing at faculty shortages in a time of burgeoning student
    interest.
        It is this faculty role to which Section 747 is crucial. Family
    medicine training funds are decisive in providing departments and
    residency programs with the minimum funding necessary to build the
    infrastructure needed to produce the family physicians needed to meet
    our nation's health care needs. The federal partnership with family
    medicine has been critical to the development of the discipline, which
    is still in its early stages. Now is not the time for the federal
    government to withdraw this much needed support.
    Title VII funds needed now more than ever to invest in development of
            innovative curricula.
        Preferential recruitment of family physicians requires a larger
    investment in family medicine education. A recent Journal of the
    American Medical Association \2\ article described the increased need
    for family physicians this way ``The continual rise in advertisements
    for family physicians suggests a delivery system preference for more
    broadly trained primary care physicians over physicians in other
    generalist fields.'' This is in addition to the marketplace being more
    interested in family physicians over specialists. This creates an even
    larger demand for ``new, rigorously designed and evaluated curricula to
    teach skills essential to optimal practice in diverse managed care
    environments''.\2\ New, innovative curricular development historically
    has been an important part of Title VII funding, and needs to continue.
    ---------------------------------------------------------------------------
        \2\ Sarena D. Seifer, MD; Barbara Troupin, MD, MBA; Gordon D.
    Rubenfield, MD, ``Changes in Market place Demand for Physicians'',
    JAMA, Vol. 276, No. 9 (September 4, 1996), p. 698, 726
    ---------------------------------------------------------------------------
               agency for health care policy and research (ahcpr)
        Also of great concern to the academic family medicine community is
    funding for the Agency for Health Care Policy and Research (AHCPR).
    AHCPR's mandate specifies clinical practice research to include primary
    care and practice-oriented research. Research funding availability is
    an important factor in increasing the number of physicians going into
    primary care medicine. We support at least $25 million in funding
    dedicated to primary care research within the Agency for Health Care
    Policy and Research. This money should be targeted to the newly
    established Center for Primary Care Research. This supplemental
    funding, with direction from Congress, will urge AHCPR to devote
    increased attention to primary care issues.
        It is estimated that less than $10 million of the total federal
    investment in medical research is awarded to family medicine
    investigators. This has precluded family medicine researchers from
    developing vigorous investigational programs to guide family physicians
    and others in providing primary care. Consequently, while our country
    has invested in basic medical science research through NIH programs,
    there has been little support to answer questions of major concern to
    family physicians or to develop clinical applications from new basic
    science knowledge. As a consequence, physicians in family practice
    although they provide the majority of care to the American people, have
    had little support in answering research questions arising from their
    own experience.
        Accordingly, a primary care research agenda is crucial. The AHCPR
    recently committed itself to establishing a Center for Primary Care
    Research within the agency. Such a center, if adequately financed,
    would provide new tools to family physicians and other generalists as
    they serve hundreds of millions of patients each year. The agenda would
    include research to improve diagnostic accuracy and streamline the
    diagnostic process while at the same time reducing inappropriate use of
    expensive, unnecessary or potentially dangerous medical tests. Such
    research also would help primary care providers and subspecialists to
    better coordinate their efforts to provide a continuum of care to those
    patients with serious medical problems. Finally, much of primary care
    research focuses on the development and assessment of protocols of care
    that are intended to make the best use of this country's strained
    health care dollars.
        Although a bit simplistic, one can look at primary care research as
    research into the best ways to implement the successes of biomedical
    research. In other words, how do we put the critical information
    derived from biomedical research to use in the population. This mandate
    to the agency has given hope that much needed primary care research
    would receive federal attention and support and be able to provide the
    nation with a great deal of information to help control costs of health
    care and improve, or reduce, morbidity and mortality. If we are ever to
    change the status quo in this country and examine the root causes of
    expensive and unnecessary medical care, research in family medicine and
    primary care is essential. This research has no home elsewhere in the
    federal government. We implore you to recognize the need for such a
    home and support the Center for Primary Care Research with dedicated
    funding within AHCPR.
           recommendations for family medicine training and research
        The Organizations of Academic Family Medicine have three main
    recommendations for the fiscal year 1998 Labor/HHS Appropriations bill.
    They are as follows:
      --We ask that you continue your support for family medicine training,
            and bring the appropriations level for section 747 up to $87
            million for fiscal year 1998.
      --We ask the committee to express, in its report, the need for
            designated funding for family medicine training programs, even
            in light of a single authorization for primary care training
            programs.
      --In order to support critical practice-oriented primary care
            research we are asking that at least an additional $25 million
            be targeted to the new Center for Primary Care Research at the
            Agency for Health Care Policy and Research.
                                     ______

          Prepared Statement of the American Psychological Association
        The American Psychological Association (APA) is pleased to have the
    opportunity to submit this testimony concerning the fiscal year 1998
    appropriations for the Departments of Health and Human Services. APA
    represents 151,000 members and affiliates, many of whom conduct
    behavioral research funded by the National Institutes of Health, work
    in community programs funded by the Centers for Disease Control and
    Prevention, train the next generation of psychologists with funds from
    the Bureau of Health Professions, or who, in helping their patients
    reach their full potential, are otherwise affected by this
    subcommittee's funding decisions.
                         national institutes of health
        Chairman Specter, APA commends your leadership, and the work of
    this Subcommittee, in sustaining the growth and accomplishments of the
    National Institutes of Health. The generous increases of the past two
    fiscal years have speeded progress in the prevention and treatment of
    disease and disability. APA supports the request of the Ad Hoc Group
    for Biomedical Research of 9 percent for NIH in the coming fiscal year.
        Psychologists funded by the National Institutes of Health are
    conducting vital basic research on human development, perception and
    cognition, and applied research on the prevention of illness,
    management of chronic conditions, adherence to treatment regimens and
    rehabilitation. By one measure, NIH funds nearly one billion dollars in
    research on the connections between behavior and health. This is money
    well spent, since the World Health Organization's recent report, ``The
    Global Burden of Disease,'' shows that worldwide, chronic conditions
    with major behavioral components (i.e. ischemic heart disease, cancer,
    substance abuse, injuries) by the year 2020 will account for 73 percent
    of mortality, up from 55 percent in 1990.
        Behavioral research is conducted by almost every Institute, Center
    and Division at NIH. The Office of Behavioral and Social Sciences
    Research (OBSSR) in the Office of the Director was established to
    coordinate this research, since behavioral and social factors
    contribute significantly to human health. OBSSR is making a strong
    contribution to NIH by facilitating cross-talk among the ICDs and
    making possible the pooling of resources to answer basic and applied
    behavioral and social questions that are relevant to more than one
    institute. One current example is a new Request for Applications on
    Strategies for Health Behavior Change, to which the National Cancer
    Institute and other ICDs have contributed, that will encourage research
    on health behaviors including sustaining improvement in diet and
    exercise habits. OBSSR has a modest budget, $2.5 million in 1997. APA
    encourages the committee to allocate $4 million for OBSSR in fiscal
    year 1998. This will substantially increase the ability of OBSSR to
    cofund interdisciplinary training programs (so that geneticists, for
    example, may learn behavioral research paradigms, and vice versa).
                   centers for disease control and prevention
        APA also urges this Subcommittee's support for the Centers for
    Disease Control and Prevention (CDC). The CDC has led federal public
    health efforts to address behaviorally-based public health problems,
    such as community-based HIV/AIDS prevention, the spread of sexually
    transmitted diseases, accidental injury and death, violence, suicide,
    and many other issues. We urge the subcommittee to provide funding for
    these programs equivalent to the President's fiscal year 1998 budget
    request.
        National Institute for Occupational Safety and Health (NIOSH).--
    Since 1971, NIOSH has conducted a sound program of research to improve
    worker health and productivity that is not duplicated by any other
    federal agency or private entity. In the area of workplace stress, for
    example, NIOSH has supported applied laboratory and field studies of
    risk factors for occupational stress, health and performance effects,
    and intervention strategies. Psychological disorders resulting from
    stress are among the nation's major workplace issues, affecting job
    productivity and health care costs. Stress-related absenteeism, lower
    productivity, medical insurance costs, and the re-hiring and re-
    training of workers result in estimated losses to U.S. businesses of
    more than $150 billion each year. In response to these concerns, NIOSH
    has led the federal effort to explore ways to promote healthy
    workplaces and to create less stressful job sites. We urge Congress to
    provide sufficient support to NIOSH to expand these essential programs.
        HIV/AIDS Community Prevention Planning Program.--AIDS-specific
    prevention efforts at CDC, as highlighted by the CDC Advisory Committee
    on the Prevention of HIV Infection, should shift from the past emphasis
    on counseling, testing, and partner notification programs toward the
    ``front end'' of the epidemic--that is, the development and
    implementation of behavioral technologies to reduce risk behaviors
    among target populations. Such behaviorally-based prevention strategies
    are the most effective and least costly means of slowing the AIDS
    epidemic.
        Conceived as a means of providing local control, flexibility, and
    community empowerment for the development of prevention programs, the
    CDC Community Prevention Planning model has proven successful as a
    strategy for developing locally driven, scientifically-based HIV
    prevention plans. Non-competitive grants are provided to states and
    localities hardest hit by the epidemic on the basis of these plans, for
    which the CDC provides technical guidance and assistance.
        National Center for Injury Prevention and Control.--The National
    Center for Injury Prevention and Control (NCIPC) has provided federal
    leadership in epidemiological research, intervention, and prevention of
    accidental injury and death. NCIPC is engaged in the study and
    prevention of disability and human suffering caused by: fires and
    burns; poisoning; drowning; violence; and other injuries. In
    particular, we urge that the subcommittee support NCIPC's efforts in
    the areas of suicide and youth violence prevention. Since the 1950's,
    suicide rates among youth have nearly tripled, and youth violence rates
    have increased at similar proportions. Suicide rates have also
    increased dramatically among older Americans. The APA therefore urges
    that the subcommittee provide additional funding to NCIPC to support
    these critical activities.
           substance abuse and mental health services administration
        The rise in adolescent substance use and abuse, persistence of
    mental health and substance abuse problems among some of the nation's
    most vulnerable populations (e.g., homeless youth and adults, families
    lacking health insurance and access to preventive health and mental
    health care, etc.) are best addressed through strong federal
    leadership. The Substance Abuse and Mental Health Services
    Administration (SAMHSA) has provided innovative leadership and
    programming in these areas. In particular, we urge that the
    subcommittee support the following programs within the Mental Health
    Knowledge, Development, and Application (KDA) grant programs:
        Training of Mental Health Professionals.--Pre-service and in-
    service training of mental health professionals is critically needed to
    help improve the public mental health workforce infrastructure. In
    1993, for example, there were approximately 47.5 million children and
    adults who suffered from mental disorders, most of whom did not receive
    services. There is a severe shortage of minority providers, and of
    professionals willing to work in underserved areas.
        CMHS Clinical Training programs at the Center for Mental Health
    Services (CMHS) provide funding and assistance to meet the training
    needs of mental health professionals working with special populations.
    As such, it is critical to retain these programs, which are geared to
    meet the needs of specific underserved populations. The CMHS training
    programs for mental health professionals have been highly successful.
    By the beginning of 1994, 7,219 trainees had completed training and 83
    percent of them had paid back one month of service for each month of
    their traineeship support. Approximately 80 percent of former trainees
    continue to work in public or non-profit mental health facilities. The
    average federal investment per trainee in the Clinical Training program
    has been $11,000, a modest amount to prepare professionals, mostly
    minorities, to provide mental health services in underserved areas.
        CMHS HIV/AIDS Training.--Persons with HIV infection and their
    families face unique mental health needs. Professionals working with
    HIV-infected people often need to help clients develop adequate coping
    skills for stress associated with the disease, for associated stigma
    and discrimination, and for sustained behavior change to reduce the
    risk of further transmission. Given the growing number of people
    infected with HIV, especially among underserved or disadvantaged
    populations, the need for adequately trained mental health and other
    health professionals to address HIV-related needs is increasing
    rapidly. In the late 1980's Congress recognized these needs and
    appropriated $7 million in fiscal year 1986 for this program.
    Currently, appropriations have dropped to less than $3 million, despite
    the increased need. The APA therefore urges the subcommittee to include
    report language recommending funding for this program within the CMHS
    KDA at levels equal to fiscal 1995 appropriations.
        HIV/AIDS Mental Health Service Demonstration Grants.--Over two
    years ago, HHS Secretary Donna E. Shalala announced the first federal
    grants ever awarded specifically to develop mental health services for
    persons living with HIV/AIDS and their families. These grants, managed
    cooperatively among the Health Resources and Services Administration,
    the National Institutes of Health, and the Center for Mental Health
    Services, fund ten sites to develop programs specifically for the
    delivery of mental health services for persons with HIV/AIDS.
        While the $4.1 million program represents a small amount of money
    relative to the overall HHS budget, these demonstration grants serve as
    a model of government efficiency and responsiveness to a critical
    public health need, and therefore should be maintained. Providing
    mental health services to people with AIDS not only helps to address
    the emotional distress, anxiety, and depression that may follow a
    diagnosis of AIDS, but these services also improve the quality of life
    of HIV-infected persons, reduce the number of primary care visits (thus
    reducing health care costs), help infected persons continue to lead
    productive lives, and reduce the possibility of continued transmission
    of the disease by promoting behavioral change.
        In addition, we urge support for SAMHSA's Children's Mental Health
    Services Program supports the development of community-based,
    interagency systems of care, and reflects the state-of-the-art in
    treating children with serious emotional disorders. By recognizing the
    unique and multiple needs of children, by supporting a broad array of
    services, and by requiring collaboration among a range of child-serving
    agencies--including mental health, child welfare, juvenile justice, and
    education--this program helps to improve the quality and availability
    of appropriate child mental health services while reducing expenditures
    that have formerly gone to expensive, noncommunity-based residential
    care. The APA urges continued funding of this program at levels at
    least as great as the President's recommendation for fiscal 1998.
      other programs of the department of health and human services (dhhs)
        Congressional efforts to reform the nation's health care financing
    system raise the prospect that many more vulnerable Americans will
    receive inadequate or insufficient care in the near future. Senior
    citizens, pregnant women, persons with serious mental illness, and
    young children, infants, and adolescents living at or below the poverty
    line face greater health risks without improved access to and
    utilization of quality preventive health and mental health care
    services. Despite cuts in Medicaid and Medicare, health risks to these
    populations continue to cost all Americans billions of dollars in
    avoidable medical costs.
        In particular, the APA urges the subcommittee to provide funding at
    the President's requested levels for DHHS programs such as the Maternal
    and Child Health Block Grant, the Healthy Start Initiative, Family
    Planning (Title X), programs of the Office of Adolescent Health and the
    AIDS Education and Training Centers. In particular, the APA urges the
    subcommittee to support the President's request of $203 million for
    Title X programs, to provide comprehensive health and reproductive
    health care for low-income women.
        In addition, the APA wishes to highlight the importance of federal
    Violence Against Women Act programs. For both the victim of domestic
    violence and the family, domestic violence and abuse may lead to
    destructive long-term psychological and physical consequences. The
    research of psychologists and other behavioral scientists has shown the
    effectiveness of comprehensive services for victims of domestic
    violence, as well as the effectiveness of domestic violence education
    and prevention programs. VAWA programs authorized under DHHS as well as
    the Department of Justice need to receive full funding as a package, to
    improve prevention and prosecution of domestic violence.
        the bureau of health professions & national health service corps
        APA recommends an appropriation of $302 million for the Bureau of
    Health Professions for fiscal year 1998, which is a three percent
    inflationary increase over the fiscal year 1997 funding. This
    appropriation is necessary to maintain current efforts to address our
    nation's rapidly changing demographics and to meet the health needs of
    underserved populations. This is also the only federal program with a
    focus on increasing the number of minority persons in the health
    professions. A severe shortage of minority psychologists exists despite
    the fact that by the year 2000, over one-third of the U.S. population
    will be minorities. There is a critical need for health professionals
    who specialize in behavioral change, considering the report by the
    World Health Organization (1996) stating that most health problems by
    the year 2020 will have large behavioral components (i.e. lung cancer
    and heart disease). In addition to behaviorally-based health problems,
    psychologists also address debilitating mental illnesses. For both men
    and women, mental illnesses (unipolar major depression, bipolar
    disorder, schizophrenia) are three of the ten leading causes of
    disability worldwide. In order to meet the behavioral and mental health
    needs now and in the future, it is imperative that funding be available
    for minority psychology students in the Health Professions Education
    Programs.
        APA recommends $145 million for the National Health Service Corps
    for fiscal year 1998, which is a modest increase over fiscal year 1997.
    This unique program provides loan repayment (or other assistance) to
    psychologists and other health professionals in exchange for service in
    underserved areas, primarily rural. Currently, there are approximately
    500 mental health professional shortages areas (NHSC, 1997) nationwide
    (and these only represent the communities who have requested
    designation). Until 1995 there were no psychologists enrolled in the
    program--presently there are only 12. However, there are hundreds of
    psychologists interested in the program and would gladly participate
    given the opportunity. Further, it has been demonstrated that
    psychologists who serve in underserved areas tend to remain in
    underserved areas (Center for Mental Health Services, 1994). Finally,
    the large number of mental health shortage areas and the increasing
    need for health professionals to deal with such behavioral and mental
    health problems as violence, substance abuse, diet, and mental illness
    demands that more psychologists be allowed to participate in the
    National Health Service Corps.
        Again, the members of the American Psychological Association
    appreciate your willingness to accept our testimony and funding
    recommendations.
                                     ______

      Prepared Statment of K. Kimberly Kenney, Executive Director, CFIDS
                             Association of America
        Mr. Chairman, thank you for the opportunity to present testimony to
    the Senate Labor, Health and Human Services, Education and Related
    Agencies Appropriations Subcommittee. My name is Kimberly Kenney, and I
    am executive director of The CFIDS Association of America. The
    Association is the world's largest and most active charitable
    organization dedicated to conquering chronic fatigue and immune
    dysfunction syndrome, or CFIDS, also known as chronic fatigue syndrome
    or CFS. The Association has more than 23,000 members and a mailing list
    of nearly 200,000. In its mission to conquer CFIDS, the Association
    supports education, public policy and research programs. Over the last
    decade since the Association was founded in 1987, we have funded over
    $2.6 million in direct research grants and have published and
    distributed hundreds of thousands of copies of our quarterly magazine,
    The CFIDS Chronicle. The CFIDS Association of America is a non-profit
    501(c)(3) organization governed by a board of directors comprised of
    persons with CFIDS, family members of persons with CFIDS and healthy
    professionals. The Association raises nearly all of its funds from
    persons with CFIDS and those who care about them.
        CFIDS is a serious and complex illness that affects many different
    body systems. The cause has not yet been identified and there is no
    cure. The illness is characterized by bone-crushing fatigue, persistent
    flu-like symptoms, intractable pain and Alzheimer-like cognitive
    deficits. These and other symptoms can come and go, complicating
    treatment and the ability to cope with the illness. In addition, most
    symptoms are invisible making it difficult for others to understand the
    vast array of debilitating symptoms that persons with CFIDS have. The
    impact of this illness is often severely disabling; it can last for
    many years. Further, it is often misdiagnosed because it closely
    resembles other disorders including multiple sclerosis, Lyme disease,
    lupus and post-polio syndrome. Studies using the restrictive research
    definition of CFS have reported conservative estimates indicating that
    500,000 adults in the United States suffer from CFIDS. Early
    preliminary studies of the number of children and adolescents affected
    are inadequate to fully assess the impact of this illness on our
    nation's young people. However, one thing is certain--kids do get CFIDS
    and the illness and the lack of understanding about it by
    pediatricians, school teachers and administrators and other children
    can make for a nightmarish experience for the young patient and his/her
    parents.
        I wish to report on the progress being made in gaining an improved
    understanding of CFIDS. I also would like to make requests of this
    committee for its continued support of activities which have been
    critical to this improved understanding. This committee has provided
    leadership and vision for the federal agencies which must meet the
    needs of persons with CFIDS. The CFIDS-related report language
    contained in the fiscal year 1997 appropriations omnibus bill was
    greatly appreciated by the CFIDS community.
        Through its education, public policy and research programs, The
    CFIDS Association leads efforts to make CFIDS a mainstream medical
    concern. The courageous efforts of CFIDS advocates and pioneering
    researchers and clinicians have created a foundation of knowledge and
    experience. The research effort has expanded over the years to include
    many fine minds representing numerous disciplines and dozens of
    universities and countries. Patient care and diagnosis remain more art
    than science, but meaningful advances promise to be imminent and
    initiatives underway to educate healthcare professionals will improve
    understanding of the complexity of this illness among providers.
        Please allow me to recount some of the specific accomplishments of
    the past year that underscore the value of continued federal investment
    in these activities:
      --Thanks to the direction provided by this committee, on September 5,
            1996, Secretary for Health Dr. Donna Shalala signed the charter
            for the Chronic Fatigue Syndrome Coordinating Committee. This
            charter guarantees that a forum exists for government agencies
            to regularly share information with one another and the patient
            and medical communities. The National Institutes of Health
            (NIH), Centers for Disease Control and Prevention (CDC), Food
            and Drug Administration (FDA), Health Resources and Services
            Administration (HRSA) and Social Security Administration (SSA)
            are required to appoint representatives to this committee.
            Seven individuals selected by Dr. Shalala will represent the
            patient community, the research community, and the healthcare
            community. I am honored to inform you that I have been invited
            to serve a four-year term as one of the seven appointees. We
            look forward to the first meeting of this chartered committee
            on May 29 and I will keep you and your staff apprised of the
            conduct of this important body.
      --Dr. Robert Suhadolnik of Temple University has discovered a new
            enzyme in CFIDS patients that is present in neither healthy
            controls nor several disease control groups. The studies
            leading to this finding were financially supported by The CFIDS
            Association of America, however the NIH has provided Dr.
            Suhadolnik with significant bridge funding to ensure that his
            work can continue unimpeded while the application for extended
            NIH funding proceeds through the lengthy review process. Dr.
            Suhadolnik is hopeful that this finding will lead to a
            diagnostic test.
      --Eight institutes of the National Institutes of Health joined
            together to issue a Program Announcement on chronic fatigue
            syndrome that outlined 32 areas of promising study. This
            announcement came as a result of a meeting held at NIAID in
            September 1995 in which the NIH-supported CFS program was
            reviewed and priorities were recommended by a multi-
            disciplinary group of experts from prestigious universities.
            The first round of grant applications resulting from this
            Program Announcement will be peer-reviewed this May; we eagerly
            await funding announcements.
      --In similar fashion, last August the CDC assembled a peer-review
            group of which I was one member, to examine its CFS-related
            research program. At the end of the two-day session, our group
            presented numerous recommendations to CDC officials and the CFS
            research team; these recommendations were also presented to the
            CDC's National Center for Infectious Diseases Board of
            Counselors. We were delighted that key recommendations made to
            CDC were highlighted in the Appropriations Conference Report
            and in a colloquy on the floor between Senator Specter and
            Senator Harkin.
      --For the first time in its 10-year history, last fall The CFIDS
            Association received a federal contract. This small contract,
            extended by HRSA, enabled the Association to convene
            representatives from the nation's Area Health Education Centers
            (AHECs) to discuss methods of educating healthcare
            professionals about CFIDS through the AHEC program. In recent
            meetings with HRSA staff we have discussed implementation of
            the strategies identified to be most promising by this task
            force.
      --Finally, Dr. Philip Lee's leadership before his retirement from the
            Assistant Secretary for Health post led to the development of
            an HHS satellite program about CFIDS which will be presented to
            healthcare providers, CFIDS patients and other interested
            parties on September 18 of this year. The NIH, CDC, private
            researchers and clinicians and patient advocates are working
            together to develop this program which will feature pre-taped
            and live segments and an interactive question and answer
            session. Our hope is that providers across the country will
            meet at universities, hospitals, community colleges, even
            sports bars, to receive the satellite transmission of this
            first government-sponsored educational program about CFIDS.
        These achievements have been facilitated through a significant,
    though comparatively small combined federal investment of $13.7
    million.
        This evidence of progress, though certainly encouraging, has not
    yet translated into the kinds of advances that affect the individual
    patients who have watched their former healthy lives be erased by this
    devastating disease. Diagnosis is still made by excluding all other
    possible causes of symptoms. For those patients who find a physician
    knowledgeable and willing to treat them, the ``state of the art'' is
    commonly a discouraging (and potentially dangerous) process of trial
    and error using any number of usually inadequate symptomatic medicines.
    And for patients who cannot continue working due to the physical and
    cognitive limitations imposed by CFIDS, the process of applying for
    Social Security benefits regularly takes two years to complete and is
    successful only 14 percent of the time--half the national average for
    all other disabilities. Finally, researchers intrigued by reports in
    the peer-reviewed literature or by findings they make in their own
    patient cohorts are often discouraged from pursuing promising studies
    because of the lack of available funds. For example, The CFIDS
    Association of America has experienced a four-fold increase in the
    number of dollars requested by researchers for projects which were
    deemed meritorious by our Scientific Advisory Committee. This same
    situation is likely to befall the NIH as these investigators make
    application for federal support.
        To encourage continued growth in the CFIDS research effort and to
    undertake programs that will begin to address the real-world needs of
    CFIDS patients for earlier detection, better care, and improved access
    to Social Security disability benefits, we must request an expansion of
    resources dedicated to these crucial efforts. The CFIDS Association of
    America offers the following recommendations for fiscal year 1998
    appropriations and committee report language:
    Secretary for Health
        The Association requests that Congress specifically provide $1
    million of discretionary funds allocated to the Secretary of Health and
    Human Services to maintain the Department of Health and Human Services
    Chronic Fatigue Syndrome Coordinating Committee (DHHS CFSCC). We ask
    that the committee include report language directing the Assistant
    Secretary for Health to chair the CFSCC and use this body to coordinate
    CFIDS research across the Public Health Service by creating a yearly
    action plan. Included in the purview of the CFSCC, we recommend
    oversight into programs, performance, budget allocations, and
    priorities.
    National Institutes of Health
        Despite the recent growth in NIH funding of $800 million for fisal
    year 1997 (compared with fiscal year 1996), funding of CFIDS research
    at the NIH has remained level. The Association requests that Congress
    specifically appropriate an additional $10 million to NIH, most of
    which should be directed to extramural grants focused on promising
    areas of biomedical research. We ask that the committee include report
    language continuing to direct NIH spending priorities to investigations
    that will define the pathophysiology of the illness and identify
    diagnostic markers. We are concerned that the cross-institute
    partnership demonstrated by last year's CFS Program Announcement
    noticeably did not include participation by the National Institute on
    Child Health and Human Development. We ask that the Committee include
    report language establishing the need for a special Program
    Announcement dedicated to the study of all facets of pediatric CFIDS.
    Finally, the Association asks for report language urging NIH officials
    to identify appropriate NIH advisory committees for CFIDS
    representation and ensure appointment of appropriate persons thereon.
    Centers for Disease Control and Prevention
        At the CDC, growth in the CFIDS research program has stalled and
    promising research is not being published in a timely manner. The
    Association requests that Congress direct an addition of $5 million to
    expand CFIDS laboratory studies (including serial analysis of genomic
    expression (SAGE) studies) and surveillance projects, including
    outreach to populations not formerly recognized as being affected by
    CFIDS, namely minority populations and children and adolescents.
    Although last year this Committee encouraged CDC to commence such
    studies, there has been no commitment by CDC to address these
    populations in a meaningful way. Further, we request language that
    directs CDC to conduct as part of these surveillance projects studies
    of the natural history of pediatric CFIDS so that future large scale
    studies of the prevalence of pediatric CFIDS might be carried out more
    effectively. Congressional support for the addition of a
    neuroendocrinologist to the CDC's CFS research group would enable
    expansion of research initiatives to follow up on productive findings
    from the NIH and private sector.
    Social Security Administration
        Despite the regular attempts by this Committee to secure the
    attention of SSA officials to the unique problems that CFIDS patients
    encounter in the process of applying for SSDI benefits, the situation
    remains that CFIDS patients regularly encounter SSA employees
    unfamiliar with or erroneously informed about CFIDS and its diagnosis
    and the functional limitations the illness imposes. We are encouraged
    by very recent meetings with top officials from the Office of
    Disability to examine the obstacles to benefits for persons with CFIDS
    and we ask the Committee to express its strong support for the
    continuation of this process. The Association asks the Committee to
    direct the SSA, through report language, to develop appropriate
    training agendas and materials for SSA and Disability Determination
    Services employees at all levels of the adjudication process. We also
    request report language indicating that three years ago the Committee
    recommended that SSA establish a CFIDS Advisory Committee to review
    current medical standards and investigate the training and information
    resource needs of regional SSA offices. Since SSA has resisted creating
    such an advisory board, the Association asks the Committee to include
    language noting that the Appropriations Committee will closely monitor
    the progress of the informal study group now assembled.
    Health Resources and Services Administration
        The Association requests an appropriation of $500,000 to HRSA to
    undertake new CFIDS-related healthcare provider education programs
    through the existing Area Health Education Center Program. These
    programs would be directed at primary care providers (including those
    in training) and would have the objective of improving the detection,
    diagnosis, treatment and management of CFIDS patients. Effective
    programs could yield healthcare spending savings equal to many times
    this small investment.
        Members of the Committee familiar with our issue will recognize
    some of these requests from previous years. The Association has strived
    to make consistent, reasonable requests with the goal of providing
    greater clarification of issues critical to those who suffer from the
    disease. Using this strategy, we have been rewarded through the
    progress in many areas which I spoke about earlier. However, there are
    still great challenges ahead.
        We sincerely hope that, once again, Congress will work with us to
    secure a dedicated and effective federal response to CFIDS so that we
    can put an end to the suffering caused by CFIDS at the earliest date
    possible. Last year Representatives Fazio, Pallone, Engel, Farr,
    Stearns, McHale, Morella and Gilman demonstrated their support for
    constituents affected by CFIDS by circulating a ``Dear Colleague''
    letter underscoring the need for a significant federal response to
    CFIDS. The CFIDS Association of America will continue its efforts to
    inform Congress about CFIDS to secure support for this committee's
    leadership on the illness, as well as that shown by other individual
    Members. On May 16 the Association will host Congressional briefings
    being sponsored by Senator Harry Reid. We will also continue our
    efforts to hold the federal agencies accountable for the direction
    delivered by Congress through the Appropriations bill and its
    accompanying report language. Together, the Congress and CFIDS
    advocates will work to maximize the federal contribution to the battle
    against CFIDS.
        Mr. Chairman, we have all worked diligently to develop a basic
    understanding about CFIDS. The investment we've made over the last
    decade will soon generate dividends in terms of more definitive means
    of diagnosing, treating and, perhaps, preventing the illness. Your
    commitment to this effort is needed now more than ever. We must
    capitalize on the opportunities now before us so that the children,
    teens and adults with CFIDS experience improved care and function. They
    wish desperately to return to productive lives as students, parents,
    employees and citizens. Thank you for your thoughtful consideration of
    our requests.
                                     ______

        Prepared Statement of the American Association of Dental Schools
        The American Association of Dental Schools (AADS) represents all of
    the dental schools in the United States, as well as advanced dental
    education, hospital dental residency programs, and allied dental
    education institutions. It is within these institutions that future
    practitioners, educators, and researchers are trained; significant
    dental care provided: and the majority of dental research conducted.
    The AADS is the one national organization that speaks exclusively for
    dental education.
        While dentistry has made significant progress in preventing oral
    disease and developing primary care treatments, less than half of all
    Americans have access to routine dental care. Consequently, oral
    diseases are still among the most prevalent and common of all chronic
    health conditions. Eighty-four percent of all children have experienced
    dental decay by age 17. Oral conditions left untreated severely impair
    a child's ability to concentrate in school and result in more than 52
    million hours of time away from the classroom annually. If we are
    serious about having all children ready to learn by the time they enter
    school, we must improve access to comprehensive health services.
    including adequate oral health care.
        Periodontal disease is also pervasive among adults 18 and over due
    to the lack of dental coverage in employer-provided health plans. Oral
    cancer is more common than leukemia. Hodgkin's disease, melanoma of the
    skin, and cancers of the brain, cervix, ovary, liver. or stomach. Each
    year there are approximately 30,000 newly diagnosed cases of oral
    cancer, and 8,000 deaths. Accordingly, poor oral health has a
    tremendous economic impact on our country, causing our nation's
    workforce to miss more than 164 million hours of work annually.
        Our funding requests for fiscal year 1998 reflect the expanding
    role of dentistry in our nation's health care system and the changing
    nature of the profession. Because the Subcommittee is under severe
    fiscal constraints, we have focused on dental education and research
    programs that are extremely cost-effective and will yield a significant
    return for the federal investment in improving access to primary health
    care.
    General Dentistry Residency Program:
        With the concern about returns on federal investments, we are
    pleased to present a primary care success story. The General Dentistry
    Residency Grant program provides support to dental schools, hospitals,
    medical centers, and other postgraduate dental training institutions to
    expand or establish General Dentistry Residency programs. These
    residency training programs provide dentists with the skills and
    clinical experience needed to treat the oral health needs of patients
    throughout life. Because the General Dentistry program emphasizes
    primary care, dentists are trained to deliver a broader range of
    services to patients and as a result, consistently refer fewer patients
    to specialists. This is especially important to populations which would
    otherwise be underserved, including the elderly, indigent, people in
    rural areas, and other patients requiring specialized or complex care
    such as developmentally disabled individuals, high risk medical
    patients, and patients with infectious diseases. These patients often
    face financial or logistical problems that make dental care
    unobtainable. The training offered under the General Dentistry
    Residency program is similar to the internship year in medicine and
    also the dental equivalent to family medicine. The experience obtained
    from participating in General Dentistry Residency programs often
    inspires program graduates to continue to serve special population
    patients in their professional practice. In fact, a HRSA evaluation
    reveals that 87 percent of those who receive General Dentistry
    residency training remain primary care providers.
        What does this mean in terms of patient treatment? HRSA found that
    compared to private practice, residents in these programs treat four
    times the number of developmentally disabled, six times the number of
    medically compromised, and 26 times the number of HIV/AIDS patients.
    General dentistry residencies prepare dentists to treat: individuals
    suffering from diseases such as diabetes, cystic fibrosis, and rare or
    so-called orphan diseases and conditions such as ectodermal dysplasia,
    Sjogren's syndrome, and cleft lip and cleft palate: elderly patients
    whose treatment must often be significantly altered because of their
    medical history; individuals who suffer oral complications because of
    cancer chemotherapy or radiation to the head or neck; patients with
    primary oral conditions such as oral cancers and certain chronic pain
    conditions; and patients who need major facial reconstructive surgery
    because of developmental disorders or trauma.
        The General Dentistry Residency program is a true partnership with
    the federal government which has proven its cost-effectiveness. HRSA
    funding provides grantees the ``seed money'' for the start-up of new
    General Dentistry Residency positions. Federal grant funds are limited
    to only three years--one of the selection criteria for grant recipients
    is the ability to be self-sustaining at the end of the three year grant
    cycle--unlike most other Title VII programs. The federal government
    makes this initial investment because of the recognition of the high
    cost of start-up funding for dental equipment and instrumentation and
    other factors associated with initiating residency training positions.
    Once the federal funds end, it takes considerable skill to maintain
    programs, because they must attract enough self-pay patients and
    patients with dental insurance to offset the losses incurred in
    treating the indigent.
        Recent evaluations continue to confirm the success of General
    Dentistry Residency programs in meeting federal primary care
    objectives. The Bureau of Health Professions' evaluation of this
    program found that ``Considering the relatively modest investment of
    funds by the federal government the impact on the growth and scope of
    General Dentistry programs and the subsequent effect on dental care has
    been substantial.''
        Here are a few key profiles of the General Dentistry Residency
    program from around the country:
      --Lutheran Medical Center in Brooklyn, New York, is a general
            dentistry program that serves 12 community health centers. One
            of the rotations in this General Dentistry program is the
            Floating Hospital (known also as New York's Ship of Health),
            which is alternately docked at piers on the Hudson River and
            South Street Seaport. General Dentistry Residents provide oral
            health services to New York school children and adults,
            including the homeless and poor.
      --General Dentistry programs in New Jersey have established residency
            rotations throughout the state, to sites such as community,
            migrant, and rural health centers, and other clinics aimed at
            providing care to under-served communities.
      --Boston University has a current grant that has provided for
            residents to treat underserved populations in two community
            health centers in Boston. In addition, residents treat
            pediatric AIDS patients through a special program at Boston
            Medical Center. The grant has also spurred outreach programs to
            inner city elementary schools and senior citizens with unmet
            needs. Residents also provide care for those who otherwise
            would not receive dental treatment, such as spinal cord injury
            patients. transitional care unit patients from acute care
            hospital stays, and homeless/battered women at shelters in the
            city. They want to expand by 6 residents by applying for a
            future grant, to meet growing unmet oral health needs in the
            community and expand community outreach activities.
      --The University of Pennsylvania's program has a very strong clinical
            component: approximately 75 percent of the work week is spent
            in primary patient care with faculty supervision. Students
            integrate basic sciences (such as anatomy. pharmacology,
            physiology, biochemistry, internal medicine, oral medicine,
            pathology, histology and immunology), with the practice of
            clinical dentistry to develop a multi-disciplinary approach to
            total patient care. Residents deliver care to a diverse patient
            population, thus gaining the clinical experience and skills to
            administer comprehensive care services in their professional
            practice.
      --Ohio State University received grants at four different times over
            12 years which has helped the program grow to 15 residents.
            This program is the primary oral health resource for special
            needs adults and some children in the southern two-thirds of
            Ohio. Their target populations are migrant/rural workers, low
            income and homebound elderly patients (and those in nursing
            homes), HIV and other high risk groups, disabled patients. and
            the medically compromised. 90 percent of their graduates remain
            primary care providers. Their underrepresented minority
            enrollment is 13 percent and enrollment of women is 38 percent
            (both figures are higher than the percentages among dental
            school graduates).
      --Cleveland Metrohealth Hospital has benefited from General Dentistry
            funding. One success story from the program is Dr. William L.
            Ebbs, Chief of Dental Services at the Whitman Walker Clinic in
            Washington, D.C., devoted to treating HIV/AIDS patients.
            Because people are living longer with the disease, they
            continue to need services such as basic oral health care.
            Because of his broad-based training, including receiving a
            dental degree from Howard University and teaching at the Case
            Western Reserve University's School of Dentistry, he is able to
            manage the complex oral health needs of people living with HIV/
            AIDS, including the interaction of new drug therapies with oral
            health care.
      --The University of Vermont's General Dentistry program is vital to
            treating medically compromised patients in the rural areas of
            Maine, New Hampshire, and Vermont, as it is the only such
            program in those states. Their residents spend eight months in
            the dental clinic treating medically compromised patients and
            the other four months in the hospital doing surgical rounds.
            The clinic slogan is ``eliminate the $600 ambulance ride with a
            $15 dental visit.'' The program is 50 years old, and has
            graduated 250 dentists, 80 percent of whom go on to practice in
            rural areas. Its continuation may depend on the ability to
            compete successfully for HRSA General Dentistry grants.
      --Another General Dentistry individual success story is Dr. Mayra
            Suero-Wade. Six years ago after completion of a General
            Dentistry residency program, she started her own business in
            New York City called ``Dentistry in Motion.'' This provides
            oral health care via a mobile dental clinic to agencies that do
            not have access, such as foster care agencies and nursing
            homes. Dr. Wade has revolutionized the oral health care system
            for low income children by bringing the care to them rather
            than making them seek out the care themselves. She and the four
            dentists she supervises see real devastation in their young
            patients' mouths because they have never seen a dentist before;
            it is common to see gum disease in the 3-5 year-olds. The
            mobile clinic goes out in five hours intervals and sometimes
            sees 20 kids at a time. Dr. Wade also has a private practice,
            but her innovative outreach activity is not uncommon among
            those receiving General Dentistry training. Such trainees
            become very attuned to the access problems and barriers to oral
            health care in their communities.
        It is important to understand that without the impact of the HRSA
    General Dentistry grant program, many of these developments and
    individual achievements would not have been possible. If the program is
    severely restricted and not adequately funded, many of the future
    activities described will be thwarted.
        Demand continues to outpace supply for this primary care training
    as approximately 300 additional training positions are needed to
    accommodate the number of current applicants. Without Federal support
    it would be extremely difficult to create new programs because of the
    lead time needed for these programs to become self-suffcient, and
    because of the high cost of start-up funding for dental equipment and
    instrumentation.
        Currently, approximately one out of every four applicants for a
    General Dentistry residency position is turned away. The continually
    increasing demand for this training is a strong testament to its value.
    The Institute of Medicine's 1995 report on dental education, ``Dental
    Education at the Crossroads,'' recommends the creation of additional
    General Dentistry positions to meet existing demand, with a goal over
    five to ten years of expanding sufficient positions to meet the demands
    of all U.S. dental schools graduates seeking such training.
        It is important to understand that this program is not increasing
    the supply of dentists, but provides additional training of dental
    school graduates to meet society's primary oral health care needs.
    However, the General Dentistry Residency program turns away
    approximately 300 applicants each year. The increasing demand for this
    training is a strong testament to its value. Over the past 20 years,
    federal support for General Dentistry training programs has created 59
    new programs and established 560 new training positions.
        Despite this progress, accepting the Administration's proposal to
    cluster the General Dentistry Residency program with seven other Title
    VII programs and slash the overall budget would eviscerate the General
    Dentistry Residency program and make it impossible to achieve important
    oral health policy goals. The AADS urges the Subcommittee to support
    the IOM recommendation by appropriating a $2.3 million increase over
    1997 levels for this cost-effective and proven primary care program in
    fiscal year 1998.
    Ryan White HIV/AIDS Dental Reimbursement Program (Title V, Ryan White
            CARE Act):
        Federal support of this reimbursement program increases access to
    oral health services for HIV positive individuals and, at the same
    time, educates dental students and residents to care for persons living
    with HIV/AIDS. Thus, two major federal objectives--service to patients
    of limited means and education of future practitioners--is accomplished
    with this important, but very modest, federal program.
        HIV/AIDS patients suffer a high incidence of oral disease. As a
    result of an immune system breakdown, AIDS patients are more
    susceptible to very severe oral herpes, rampant fungal diseases, and
    oral disease found only in patients who suffer from AIDS, including an
    extremely painful form of gum disease that frequently involves exposure
    of the bone. A survey of 857 clients of the Robert Wood Johnson
    Foundation's AIDS Health Services Program in nine cities found that
    more respondents (52 percent) reported a need for dental care than any
    other service. For example, oral lesions, common in HIV-infected
    individuals, can cause significant pain and oral infection leading to
    fevers, difficulty in eating, speaking, or taking medication, and
    weight loss. Moreover, the development of some oral problems may
    signify that HIV infection is progressing. Recognition of these oral
    problems indicates the need for initiation of treatment with
    antiretroviral therapy, drugs to prevent complications such as
    pneumonia, or involvement in a clinical drug or vaccine trial. Oral
    health care has continued to be a major need of HIV/AIDS patients.
        It is important to remember that private insurance and Medicaid
    coverage for dental services is very limited or simply unavailable for
    adults. This lack of sufficient reimbursement particularly affects
    those dental clinics that serve as the safety net for a significant
    number of Medicaid and HIV/AIDS individuals.
        This program represents a partnership between the federal
    government and dental education programs in which the government
    partially offsets the costs that dental education programs incur by
    serving a disproportionate share of HIV/AIDS patients. We accept this
    partnership because it helps us to continue to deliver and expand care
    for people living with HIV/AIDS. The program has also enhanced
    relationships dental education institutions have with state and local
    AIDS care programs. We are concerned. however, about the ability of
    dental education programs to maintain the current level of services
    with increased patient loads the evolving chronic nature of this
    disease, and dwindling clinical revenues.
        The Woodhull Medical and Mental Health Center in New York is
    currently conducting a HRSA-funded evaluation of this program. While
    the results are not yet available. a recent survey of program
    participants found that this program had a positive impact in the
    following areas: integrating oral health care with other services,
    increasing the support and commitment among providers to HIV/AIDS
    education and provision of care, increasing the providers' knowledge
    about infection control and treatment, and increasing patient access to
    oral health. Mr. Chairman, clearly this program is a critical component
    of our national effort to fight the AIDS epidemic. AADS urges a modest
    increase of $1.5 million over the fiscal year 1997 levels for this
    important program recently reauthorized under the Ryan White CARE Act.
    National Health Service Corps Scholarship and Loan Forgiveness
            Programs:
        We strongly support the NHSC Scholarship and Loan Forgiveness
    Programs, which assist students with the rising costs of financing
    their health professions education while promoting primary care access
    to underserved areas.
        Over the last several years. and most recently in fiscal year 1997,
    the appropriations report language has instructed the NHSC to increase
    dental participation in the loan repayment and scholarship awards
    programs. The number of dental loan repayment awards has increased
    slowly in recent years, and fiscal year 1997 awards for dentists
    already outpace the fiscal year 1996 number. However, problems continue
    to exist in the scholarship program, which has almost completely
    abandoned dental scholarships (only 8 scholarships have been awarded
    since 1992: none were awarded in 1995). We believe it is critical that
    the NHSC commitment to dentistry be maintained and strengthened as the
    need for dental providers is becoming more pronounced in underserved
    areas throughout the nation. When the Department of Health and Human
    Services updated the dental Health Professions Shortage Areas (HPSAs)
    in 1993, it became clear that the situation worsened for dentistry.
    Currently. 2,600 dentists are needed to service 935 designated HPSAs,
    as compared to 1,400 dentists needed for 792 dental HPSAs prior to
    1993.
        Oral health services are still needed throughout the U.S. to assure
    rural and urban underserved people relief of pain and elimination of
    oral infections. Without these services, dental and oral diseases will
    result in diminished employment prospects for those without jobs,
    decreased ability of school children to concentrate, lower worker
    productivity, and increased medical problems. Unless more dentists are
    made available in shortage areas, we will continue to see costs climb
    as hospital emergency rooms are used to provide extensive care for what
    began as a dental problem and has evolved into a systemic condition.
    AADS asks the Subcommittee to include language in its report
    reaffirming the need for increased dental participation in both the
    NHSC scholarship and loan repayment programs.
    Health Professions Education and Training Programs for Minority and
            Disadvantaged Students:
        We want to express our strong support for the various programs that
    play a critical role in the recruitment and retention of disadvantaged
    students and the recruitment of disadvantaged faculty. We request
    funding for the Scholarships for Disadvantaged Students at $20 million
    and the Exceptional Financial Need Scholarships at $15 million, the
    Loan for Disadvantaged Students program at $10 million, the Centers of
    Exccilence program at $28 million, the Disadvantaged Assistance program
    (Health Careers Opportunity Program/Federal Financial Assistance for
    Disadvantaged Health Professions Students) at $35 million, and the
    Faculty Loan Repayment program at $2.5 million. These funding levels
    will maintain our nation's strong commitment to diversity and
    opportunity in the health professions.
        Increasing the federal investment in these programs, even by a
    modest amount, would greatly enhance the ability to both recruit and
    retain more disadvantaged students in the health professions and
    address the severe access and public health problems plaguing those
    areas of our country experiencing a significant shortage of health care
    professionals. The AADS urges the Subcommittee to seriously consider
    the important impact of these programs.
    Other Programs Under Title VII of the Public Health Service Act:
        We also urge the Subcommittee to fund the following programs at
    adequate levels because of their importance in promoting access to
    healthcare for special populations: Rural Health Training and the
    Health Education and Training Centers programs, Geriatric Initiatives,
    Area Health Education Centers, and Allied Health Special Projects. The
    AADS endorses the fiscal year 1998 budget recommendation proposed by
    the Health Professions and Nursing Education Coalition.
        In addition, the AADS remains very concerned about the targeted
    elimination of the Health Education Assistance Loan (HEAL) program and
    the impact on the ability of dental students to pursue their training.
    We urge the committee to either reconsider this issue or strongly
    encourage the Department of Education to meet this need under the
    unsubsidized Stafford Loan Program to compensate for the elimination of
    the HEAL program. Without an alternative to the HEAL program, a dental
    education will be out of reach for all but the wealthiest students
    because of the high expense of borrowing in the private loan market. It
    is important that all dental students have access to financial
    assistance that will not leave them with an insurmountable debt.
        AADS urges the strong support of the Subcommittee for the Health
    Professions Student Loan (HPSL) program, that could provide additional
    low cost student loan funds to meet the financial needs of health
    professions students previously served by the HEAL program. HPSL funds
    should be used to assist institutions in developing and maintaining a
    sufficient revolving fund. The AADS requests $10 million for this
    program in fiscal year 1998.
    National Institutes of Health/National Institute for Dental Research:
        We are extremely grateful for Chairman Specter's leadership in the
    area of biomedical research. Support for the National Institutes of
    Health, and the National Institute of Dental Research (NIDR) in
    particular, has yielded results applicable not only to oral health, but
    to health in general. NlDR's objective is to promote the advancement of
    research in all sciences pertaining to the mouth and facial structures,
    to seek ways of treating and preventing oral diseases, and to
    facilitate the transfer of knowledge into practical help for the
    public. Research funded by NIDR has opened new pathways to better
    diagnosis, prevention. and treatment of oral disease. Increased funding
    is essential to the continuation of important research into the general
    health and primary care of America's children, adults, and senior
    citizens. The AADS endorses the testimony of the American Association
    for Dental Research regarding priorities and funding of $212.5 million
    for the NIDR in fiscal year 1998.
    Agency for Health Care Policy Research (AHCPR):
        The AADS joins the Friends of AHCPR in supporting a budget of $160
    million in fiscal year 1998. A particularly important AHCPR activity is
    the Dental Scholar in Residence program, which was established to
    assist the agency in conducting research to improve the delivery of
    effective dental and oral health services and to facilitate
    collaborative relationships among professional, educational, research,
    and other health industry sectors involved with oral health care. The
    very first recipient of this award was selected earlier this year, and
    is working in the area of measuring quality of health care and
    examining the integration of oral health services into comprehensive
    primary care systems. This work will help improve the knowledge base
    for informed oral health care policy.
        Mr. Chairman and members of the Subcommittee, the AADS appreciates
    the opportunity to present the views of its membership on these
    programs which are imperative to addressing the access and workforce
    issues that are critical to meeting the future oral health needs of our
    nation.
                                     ______

            Prepared Statement of the National Hemophilia Foundation
        Thank you for the opportunity for the National Hemophilia
    Foundation (NHF) to present testimony to the Chairman and Members of
    the Appropriations Subcommittee on Labor, Health and Human Services,
    Education, and Related Agencies. NHF is a national voluntary health
    organization dedicated to improving the health and welfare of people
    with hemophilia, von Willebrand's disease, and other bleeding
    disorders. The federally-funded hemophilia and hematologic programs
    provided for in the annual Labor, Health and Human Services
    Appropriations Bills are of great importance to the hemophilia
    community and to the general public who rely on the safety of the
    nation's blood supply. NHF appreciates the Committee's continuing
    support and leadership in advancing the research, treatment, and
    consumer-based patient outreach needs of the hemophilia community.
        The hemophilia community continues to be the first marker in the
    event of any complication or virus that contaminates the blood supply.
    While new safer blood products are available and today's blood
    manufacturing processes inactivate the HIV virus, blood and blood
    products remain susceptible to other viruses and pathogens.
        Historically, the hemophilia community has been impacted by a
    number of viruses through the blood supply. While HIV has been the most
    devastating, other viruses continue to plague the hemophilia community,
    including Hepatitis A, Hepatitis B, Hepatitis C, Parvovirus B19, and
    Creutzfeldt-Jakob disease. Strong evidence of the need for a more
    responsible and responsive blood safety system compounds as new
    announcements of blood product recalls are issued, often weeks after
    the seriousness of a problem has been detected. Our organization issued
    12 medical bulletins in 1996 regarding product investigations, recalls
    and/or withdrawals and already has issued six notices this year.
        Last year the Committee included in its fiscal year 1997 report a
    series of actions to be taken by the Public Health Service agencies to
    substantially improve surveillance, research, patient notification, and
    outreach efforts in addressing blood safety concerns. Programs funded
    by the Committee also provided for hemophilia and bleeding disorder
    programs aimed at HIV/AIDS risk reduction and clinical studies,
    prevention of the complications of bleeding disorders, and research for
    a cure for hemophilia and related disorders. Further, the Committee
    again called for a collaborative effort between the three Public Health
    Service agencies responsible for blood safety issues--the Centers for
    Disease Control and Prevention (CDC), the Food and Drug Administration
    (FDA), and the National Institutes of Health (NIH)--to work together to
    improve the safety of the U.S. blood supply and blood products.
        With regard to programs appropriated under the Labor, Health and
    Human Services, Education Appropriations Bill, NHF strongly believes
    that the CDC and the National Heart, Lung, and Blood Institute (NHLBI),
    working in collaboration with FDA, should continue to broaden current
    hemophilia programs to incorporate critically needed work on ensuring a
    safe and efficacious blood supply. Together, these programs sustain our
    nation's response to the needs of the hemophilia community and address
    the concerns of all Americans regarding blood safety.
                   centers for disease control and prevention
        Funding provided by the Committee has enabled CDC to continue its
    collaborative relationship with NHF in establishing peer-outreach
    programs such as the Men's Advocacy Network (MANN), the Women's
    Outreach Network (WONN), and the Chapter Outreach Demonstration
    Project. Through these programs, CDC, working with the Foundation, has
    been able to address the HIV epidemic and provide vital prevention
    information about blood safety and the elimination of the complications
    of hemophilia to families affected by bleeding disorders. These
    programs are essential to our community, and we support their
    continuation.
        NHF also strongly supports CDC's surveillance activities through
    its hematologic disease intervention program. A critical part of a
    strengthened surveillance effort is the continued expansion of studies
    on blood pathogens that may adversely affect blood safety.
                         national institutes of health
    National Heart, Lung, and Blood Institute
        NHF supports NHLBI in pursuing gene therapy and a cure for
    hemophilia and appreciates the Committee's strong support of these
    efforts. NHF does remain concerned about the progress of NHLBI
    regarding its study on the vulnerability of the hemophilia community to
    blood contaminants, specifically CJD, and anxiously waits for the
    results of this study.
    National Institute of Allergy and Infectious Diseases (NIAID)
        NHF also works in cooperation with NIAID to ensure access for
    people with hemophilia to clinical trials for HIV and AIDS. With the
    support of this Committee, NIAID funds clinical trials utilizing the
    existing network of hemophilia treatment centers to ensure ready access
    to breakthrough therapies and newly available drugs such as protease
    inhibitors.
                        maternal and child health bureau
        Through the Maternal and Child Health programs, Congress has been
    very supportive of the regional network of hemophilia treatment
    centers, whose expertise in treating hemophilia and its complications
    is a key part of the federal effort to reduce and begin to eliminate
    the costly complications of bleeding disorders, ensure adequate
    surveillance, and foster patient education. This program serves as a
    model for the treatment of other chronic diseases, demonstrating
    remarkable cost-effective health outcomes, including substantially
    reduced hospitalization.
                            funding recommendations
        CDC.--NHF recommends an additional $2.0 million for CDC's
    hematologic disease intervention activities focused on:
      --Fully implementing a nationwide surveillance system utilizing the
            network of hemophilia treatment centers and a serum bank to
            detect, monitor, and warn of adverse effects in blood
            recipients.
      --Strengthening consumer-based patient outreach, including expanded
            support for peer-and chapter-outreach activities, for the
            prevention of complications of hemophilia and other bleeding
            disorders.
      --Substantially improving the response process involving the CDC and
            the FDA to ensure immediate investigation of and action on any
            possible viral contamination in the U.S. blood supply or blood
            products.
        NIH.--We recommend:
      --An additional $2.0 million to further NHLBI's research to advance a
            cure for hemophilia and other bleeding disorders, with
            accelerated research into seeking a cure for hemophilia and
            other bleeding disorders reliant on blood products.
      --An additional $1.0 million to provide results from its study into
            the effects of CJD and Parvovirus B19 on the safety of the
            blood supply.
      --Sustained funding in support of the HIV/AIDS clinical trials
            program for persons with hemophilia provides access to the
            newly available drugs, such as protease inhibitors.
        MCHB.--We recommend that the hemophilia treatment centers program
    has sufficient resources to fully participate in the collection of
    critical data, surveillance activities, and patient notification
    efforts related to adverse events in blood and blood products.
        Agency Coordination.--It is critical that all responsible Public
    Health Service agencies--FDA, CDC, and NIH--work collaboratively to
    ensure a safe blood supply. To accomplish this goal, NHF is continuing
    its efforts to ensure that FDA establishes a responsive patient
    notification system. We once again request that the Appropriations
    Committee direct that a progress report be generated by the Department
    of Health and Human Services on the allocation of resources and actions
    taken in the following areas essential to protecting the U.S. blood
    supply:
      --Research, data collection, and surveillance needed to implement an
            efficacious patient notification system,
      --Improved viral inactivation methods, and
      --Consumer-based patient outreach and involvement.
        Our recommendation for a total of $5 million represents an
    incremental step in sustaining efforts to ensure a safe blood supply.
    We hope that the Committee will act favorably on our request.
                                     ______

       Prepared Statement of the Association for Health Services Research
        Thank you for the opportunity for the Association for Health
    Services Research (AHSR) to submit testimony to the Chairman and
    Members of the Appropriations Subcommittee on Labor, Health and Human
    Services, Education, and Related Agencies. AHSR appreciates the support
    that the Committee continues to provide to the Federal agencies
    responsible for the Government's health services research efforts.
        AHSR is the only national professional association devoted to the
    promotion of research focused on the delivery, quality, and financing
    of our health care system. The Association represents more than 2,500
    individuals drawn from a wide array of professional disciplines who are
    actively engaged in research and education. In addition, AHSR has 130
    organizational members including universities, consumer groups, large
    employers, insurers, managed care companies, health care systems,
    pharmaceutical companies, and other organizations representing key
    components of the private sector.
        Health services research encompasses research, data collection and
    analysis, and evaluation focused on determining what works well and
    cost-effectively in delivering health care. Its scope includes
    assessing disease interventions and their outcomes, developing better
    health quality measures, evaluating the impact of health programs, and
    providing valuable information to providers, consumers, and employers
    about these findings. In each case, health services research not only
    provides critical information, but serves as a resource to
    decisionmakers.
        Nowhere is this resource function more important than within the
    Federal Government itself. As our nation wrestles with containing the
    growth of health costs, health services research provides essential
    information on health care quality, costs, and potential savings that
    helps to reduce the growth of the Federal Medicare and Medicaid
    programs while ensuring a continued commitment to quality care.
             sustaining the commitment to health services research
    Agency for Health Care Policy and Research
        AHSR supports increased funding for the Agency for Health Care
    Policy and Research (AHCPR) as the focal point of leadership for the
    nation's health services research effort. The agency works in tandem
    with public and private sectors in enhancing health care quality,
    reducing health care costs, and making health information more readily
    available.
      --AHCPR supports and conducts research that improves disease
            treatments, often at a reduced cost to the health care system,
            by evaluating clinical trials, comparing treatment
            methodologies, and assessing the outcomes and benefits of
            health interventions.
      --AHCPR helps consumers, providers, employers, and policymakers make
            informed choices about their health care by increasing access
            to outcomes information and clinical trial results.
      --AHCPR assists in the development of measurement systems that
            enhance the ability of providers to diagnose, treat, and
            monitor disease.
        Further, AHCPR conducts the Medical Expenditure Panel Survey
    (MEPS), the only national source of information for estimating the
    costs and analyzing the impact of the growing enrollment in managed
    care. This survey yields annual data on health care costs, on quality
    of care--especially for the chronically ill, the disabled, and the
    uninsured--and on health insurance status and expenditures. MEPS is
    critically important to Congress and Federal and State agencies in the
    ongoing effort to assess the impact of health care patterns and policy
    changes. Without MEPS, it would be impossible to effectively monitor
    how much Americans spend on health care, how many Americans have health
    insurance, and how many Americans are receiving the care they need.
        Unfortunately, AHCPR's funding has diminished over the past two
    years to the point that the agency now funds 50 percent fewer grants
    today than six years ago and its ability to continue to conduct its
    vitally important work is seriously threatened. This loss of support
    has occurred while public and private sector demand for health care
    information has dramatically increased.
      --Health Care Professionals need AHCPR's patient outcomes and
            effectiveness research to determine which of the many promising
            health care interventions is most effective in day-to-day
            practice.
      --Employers and Health Plans are using AHCPR's research to develop
            patient care quality measures that are based on scientific
            rigor in order to improve accountability.
      --Employees, Consumers, and Patients are demanding good information
            so that they can make informed choices regarding health plans,
            health professionals, and the risks and benefits of alternative
            treatments.
      --Policymakers need fundamental research on the costs and utilization
            of health care services to evaluate the impact of developments
            in the health care marketplace and the costs or savings of
            proposed changes in policy.
        AHSR is recommending a funding increase for AHCPR of $16 million in
    fiscal year 1998 for a total of $160 million, which will restore agency
    funding to its fiscal year 1995 level. This funding correction will
    allow AHCPR to overcome the existing shortfall and continue its
    valuable research focus on health care delivery improvements and
    savings, particularly in the Medicare program. For example:
      --The Dupont Merck Company is supporting an AHCPR trial to determine
            the most effective way to administer anticoagulation therapy,
            which could prevent 80,000 strokes a year and save the health
            care system over $500 million annually.
      --Four peer review organizations estimate that AHCPR research on
            prostatic disease and benign prostatic hypertrophy has
            contributed $36.8 million in Medicare savings.
      --AHCPR research found that elderly patients who receive beta
            blockers are rehospitalized for heart ailments 22 percent less
            than those who do not receive beta blockers, indicating that
            the Medicare program could achieve significant savings if beta
            blocker therapy was more widely utilized.
      --AHCPR research estimates that the Medicare program could save $47
            million a year by shifting cardiac catherization to the
            outpatient setting.
        Recommendation.--AHSR strongly recommends an increase for AHCPR of
    $16 million in fiscal year 1998 for a total of $160 million, returning
    the agency to its fiscal year 1995 funding level.
    Centers for Disease Control and Prevention
        CDC's National Center for Health Statistics (NCHS) is the nation's
    principal vital and health statistics agency. NCHS conducts a broad-
    based program of ongoing and special studies to meet the nation's
    health information needs in the areas of statistics and data on health
    status--such as cancer, AIDS, obesity, blood lead levels, and low-
    weight births--and has been working in close collaboration with AHCPR
    to streamline its health data collection and analysis activities.
        NCHS also provides staff support for the National Committee on
    Vital and Health Statistics (NCVHS) and its subcommittees, which advise
    the Secretary of Health and Human Services on health data and
    statistics concerns. NCVHS has become increasingly active in the past
    several years, addressing issues relating to uniform health data sets,
    the need for improved mental health statistics, and the data needs of
    state and local communities. This national committee has been
    particularly involved this year in examining and developing
    recommendations to implement the administrative simplification
    provisions of the Health Insurance Portability and Accountability Act
    of 1996.
        Recommendation.--AHSR supports the continued support of NCHS as
    provided for in the President's fiscal year 1998 funding request of $89
    million.
    Health Care Financing Administration
        As the research arm of the Health Care Financing Administration
    (HCFA), the Office of Research and Demonstrations (ORD) guides the
    development and implementation of new health care financing policies
    and evaluates their impact on Medicare and Medicaid beneficiaries,
    participating providers, and states. Through research, development, and
    evaluation of payment and delivery innovations, ORD significantly
    contributes to major program reforms and improvements, including
    implementation of hospital and physician payment reform, development of
    managed care choice options, evaluation mechanisms for accessing
    nursing home quality, and enhanced quality measurement techniques.
        As our nation's health care system continues to change, there is a
    clear need for better methods to monitor and evaluate its performance.
    ORD plays a critical role in creating a better understanding of how
    well Medicare and Medicaid are performing in terms of access, quality,
    efficiency, costs, and beneficiary satisfaction and in how to further
    improve program performance. AHSR believes that HCFA and Congress will
    have an increasing need for the information and data available from ORD
    as efforts are made to modernize the Medicare and Medicaid programs,
    further control costs, and expand managed care enrollment.
        Recommendation.--AHSR recommends an additional $5 million above the
    President's fiscal year 1998 funding request of $45 million for ORD to
    lay the groundwork for monitoring and evaluating the impact of the
    growth of managed care, alternative state financing mechanisms, and
    prospective payment on the Medicare and Medicaid programs.
                         national institutes of health
    National Institute of Alcohol Abuse and Alcoholism (NIAAA)
        NIAAA is the foremost agency supporting biomedical, behavioral, and
    health service research directed towards improving the prevention and
    treatment of alcohol abuse and alcoholism and reducing associated
    health, economic, and social consequences. NIAAA's health services
    research programs identify factors that improve the effectiveness of
    alcohol treatment and prevention services across regions and
    populations.
    National Institute on Drug Abuse (NIDA)
        NIDA supports over 85 percent of the world's research on the health
    aspects of drug abuse and addiction, treatment, and prevention. In
    addition to funding research that seeks to develop a better
    understanding of the biological reward patterns of drug use, NIDA's
    health services research programs target implementation of new findings
    and prevention techniques into everyday clinical practice and work
    within communities to develop a greater public awareness of the effects
    of and prevention of drug abuse.
    National Institute on Mental Health (NIMH)
        NIMH's health services research programs are the focal point for
    studies on the frequency of mental disorders, such as schizophrenia,
    depression, anxiety and eating disorders, and Alzheimer's disease, and
    for studies on the risk factors that define the development of mental
    illness. NIMH supports the development of improved methodologies for
    conducting mental health services research and on mental health
    economics, including public and private financing of mental health
    care, the impact of different insurance and reimbursement policies, and
    the cost-effectiveness of care.
    National Library of Medicine (NLM)
        NLM's National Information Center for Health Services Research and
    Health Care Technology serves as a central clearinghouse of information
    on health services research, public and private sector clinical
    practice guidelines, and on health care technology. The databases of
    information created and maintained by the Center are a starting point
    for nearly all clinical and health services research and greatly
    enhance the ability of other federal and state agencies, providers, and
    consumers to access medical information.
        NLM also is involved in the evaluation of the use of telemedicine
    and computer-based patient records as part of the federal government's
    High Performance Computer and Communications Program. The evaluation of
    this program will provide a clearer picture of the benefits and
    appropriate uses of these promising technologies, including protecting
    the confidentiality of electronic health data. NLM's work in this area
    also makes the agency a natural choice for the evaluation and
    development of medical applications as part of the President's Next
    Generation Internet Initiative.
        Recommendation.--AHSR supports the President's fiscal year 1998
    budget requests for the National Institutes of Health and,
    specifically, the requests for NIAAA, NIDA, NIMH and NLM. AHSR
    recommends that NLM should be included as part of the President's Next
    Generation Internet Initiative and that funds should be directed to NLM
    for the purposes of evaluation of this initiative and to ensure
    inclusion of medical applications in the development of this new
    Internet infrastructure.
    Conclusion
        Health services research findings encourage cost-effective use of
    our nation's health care resources to provide better care, create
    greater access, and allow for more informed decisionmaking. A strong
    sustained federal commitment to health services research is essential
    if this critical information is to continue to be available as a
    resource for patients, physicians, insurers, employers, and
    policymakers. AHSR strongly supports an increased federal commitment to
    health services research as a means of reaching our nation's health
    cost containment goals while simultaneously improving our nation's
    health care delivery system.
                                     ______

      Prepared Statement of Wilveria B. Atkinson, Ph.D., the Science and
                         Technology Advisory Committee
        The National Association for Equal Opportunity in Higher Education
    (NAFEO) is the organization of Presidents and Chancellors of the
    Historically and Predominantly Black Colleges and Universities
    (HPBCUs). The committee on which I serve functions to (1) monitor
    participatory opportunities in science and technology for member
    institutions, (2) provide forums in which scientists from our
    institutions engage in dialogue with representatives from non-member
    institutions and relevant governmental and private agencies, and (3)
    advocate programs and processes that enhance the scientific and
    technological capabilities of our institutions. It is for support of
    two of the National Institutes of Health programs designed to increase
    the number of under-represented minority citizens that are engaged in
    biomedical research that I petition you today.
        The Science and Technology Advisory Committee to NAFEO is keenly
    aware of, and sensitive to your efforts regarding budget controls.
    NAFEO understands that budget priorities must be made firmly in the
    best interest of the nation as a whole. The percentage of under-
    represented minority citizens in the nation and their participation in
    the biomedical research arena will increase dramatically by the year
    2025. We have, therefore, looked carefully at the administration's
    budget request for the NIH and find no line-item budget requests for
    two of its programs that will have substantial impact in the 213
    Century on the security and leadership role of our nation in the
    biomedical research arena. They are the Research Infrastructure in
    Minority Institutions (RIMI) Program administered by the National
    Center for Research Resources (NCRR) and the Minority International
    Research Training (MIRT) Program administered by the Fogarty
    International Center (FIC).
        These programs are uniquely designed to be inclusive rather than
    exclusive by providing support for both minority and majority
    institutions through individual, collaborative and consortia
    institutional awards. In both programs, all qualified students and
    faculty meeting the criteria established by the particular institution
    are eligible to apply for and receive support for basic research or
    research training.
        The RIMI Program is inclusive. A major feature of the program is
    the enhancement of biomedical research and research training
    capabilities of the institution. Through a novel directive, it requires
    and supports collaborative biomedical research projects between
    scientists at minority institutions and scientists at Ph.D. degree-
    granting majority institutions without regard to the ethnicity of the
    scientists. The collaborative efforts undergird substantial enhancement
    of the research and research training capabilities of the minority
    institutions while supporting research of collaborating partners at
    majority institutions. Through formal collaborative agreements, half of
    the scientists supported through RIMI awards are at majority
    institutions.
        The MIRT Program is inclusive. Sixty-three percent of the programs
    are at non-HPBCUs. However, at all participating institutions, the
    primary focus of training is under-represented minorities. Trainees in
    the programs do biomedical research at premier institutions and
    training sites in fifty-seven different countries. While receiving
    invaluable biomedical research training, the academically talented,
    self-disciplined trainees are effective in counteracting the negative
    perceptions of under-represented minorities expounded for decades
    through the television media and the press. It is in the nation's best
    interest that foreign countries respect the capabilities and talents of
    under-represented minorities as these individuals assume greater
    prominence in global interactions on behalf of the United States in the
    21st Century.
        In this regard, in March 1996 Dr. Harold Varmus, Director of the
    NIH, appointed an external advisory panel, Co-Chaired by Drs. Joshua
    Lederberg of Rockefeller University and Barry Bloom of the Albert
    Einstein College of Medicine, to review the programs at the Fogarty
    International Center. The panel provided the Director its report in
    mid-December. In addition to recommendations on refocusing the
    functions of the Center/the panel endorsed three of the programs it
    administers. Second on the list of three was the Minority International
    Research Training (MIRT) Program.
        Substantial increases to the budget of the NIH have been proposed,
    and the NAFEO strongly endorses those increases. However, the proposed
    increases do not include line-item budgets for the two programs that
    the NAFEO deems to be highly supportive of the nations leadership role
    in the biomedical arena.
        Therefore, the NAFEO respectfully requests that the following line-
    item budgets be included in the NIH appropriations for the fiscal year
    that begins October 1, 1997: For the National Center for Research
    Resources, NIH: Research Infrastructure in Minority Institutions--
    $7,000, 000; For the Fogarty International Center, NIH: Minority
    International Research Training Program--$7,000,000.
        This total of fourteen million dollars for developmental research
    and research training added to the total NIH budget invested in
    biomedical research human resources within the under-represented
    minorities will still equal less than 1 percent of the budget of the
    NIH.
                                     ______

    Prepared Statement of the Council of State Administrators of Vocational
                                 Rehabilitation
        The Council of State Administrators of Vocational Rehabilitation
    (CSAVR) is comprised of the chief administrators of the public agencies
    providing rehabilitation services to persons with disabilities in the
    fifty (50) states, the District of Columbia, and the territories.
        These Agencies constitute the State partners in the State-Federal
    Program of Rehabilitation Services for persons with mental and/or
    physical disabilities, as authorized by the Rehabilitation Act of 1973,
    Public Law 93-112, as amended.
        While the Rehabilitation Act is the cornerstone of our Nation's
    commitment to assisting eligible people with disabilities to obtain
    competitive employment and to live independent and productive lives, it
    is severely underfunded.
        When one considers that a Louis Harris and Associates study
    estimates that two out of every three adults with a disability are
    unemployed, and that the Rehabilitation Program has the resources to
    provide services to only one in twenty eligible people, this
    underfunding constitutes an unacceptable tragedy for the millions of
    people with disabilities who need services in order to become employed,
    yet are unable to receive them.
        The great responsibility placed upon the Rehabilitation Program
    became even more acute, with the passage and implementation of the
    ``Americans with Disabilities Act'' (ADA). The ADA vastly expands
    opportunities for all Americans with disabilities. It is vital
    therefore that the Rehabilitation Program assist people with
    disabilities to fully realize the promise of this landmark legislation.

    Vocational rehabilitation services; basic State grants

    Fiscal year:
        1998 CSAVR recommendation...........................  $2,500,000,000
        1997 authorization..................................         ( \1\ )

    \1\ Such sums.

        Basic State Service Grants are the lifeblood of the Vocational
    Rehabilitation Program, financing the provision of vocational
    rehabilitation services to eligible individuals with mental and
    physical disabilities for placement in competitive employment.
        These Federal dollars, matched with state monies, permit State
    Rehabilitation Agencies to provide, or to contract with private
    organizations and agencies to provide individualized, comprehensive
    services to eligible persons with mental and/or physical disabilities,
    for the purpose of rendering these individuals employed and
    independent.
        Such services may include evaluation; comprehensive diagnostic
    services; counseling; physical restoration; rehabilitation engineering;
    the provision of various kinds of training and training supplies, tools
    and equipment; prosthetic devices; placement; transportation; post-
    employment services; and ``any other service'' necessary to
    rehabilitate an individual into employment.
        For fiscal year 1997, the Federal Government advises that the
    $2,176,038,000 appropriated for Basic State Vocational Rehabilitation
    provided services designed to lead to gainful employment for 1,255,142
    people with disabilities of which 979,011 were severely disabled. Of
    this number, nearly 200,000 will be placed in competitive employment.
        Despite this expenditure, there still are not sufficient funds to
    serve all those eligible, disabled people who have the potential and
    desire to work and who need rehabilitation and training services to
    obtain employment and self-sufficiency.
        In carrying out the Congressional mandate to give priority of
    service to the rehabilitation of individuals who are severely disabled,
    State Agencies have found that the costs--in time, effort, and money
    for services--are much greater than the cost of rehabilitating people
    less severely disabled.
        At the same time, it is alarming to note that the purchasing power
    of the resources available has remained virtually stagnant since 1980.
        With these statistics in mind, the Council strongly urges that the
    Congress assist us in facing this challenge by providing Federal
    appropriations for Basic State Vocational Rehabilitation Services in
    the amount of $2,500,000,000 for fiscal year 1998, an increase of
    $323,962,000 over the fiscal year 1997 appropriation and $253,112,000
    over the fiscal year 1998 Administration request. With this increase in
    resources, the CSAVR estimates that nearly 200,000 more persons will
    receive services and 22,500 more will be placed in competitive
    employment.
        The justification for higher funding levels stems from the purpose
    for which the money is spent--the prevention of an incalculable waste
    of human potential, a purpose on which no price tag can be placed.
        Over the decades, Vocational Rehabilitation has more than paid for
    itself by helping persons with disabilities become gainfully employed;
    increase their earning capacity; by freeing family members to work;
    and/or by decreasing the amount of welfare payments, health services,
    and social services they might need; as well as by assisting them to
    become taxpayers.
        Appropriating additional monies for Vocational Rehabilitation
    Services reduces the Federal Deficit.
        Indeed, the Congressional Budget Office has stated that ``a
    reduction of funds for rehabilitation * * * would generate increases in
    other parts of the federal and state budgets.''
        Funds appropriated for Vocational Rehabilitation are a sound
    investment of the Public's money.
              other programs authorized by the rehabilitation act
        The Rehabilitation Act is recognized as the most complete and well-
    balanced piece of legislation in the human services field. In addition
    to the Basic State Vocational Rehabilitation Services Program, the Act
    contains provisions for: an innovation and expansion program; a
    training program; a research program; a comprehensive services for
    independent living program; a supported employment program; and, among
    others, special projects and demonstration efforts. The CSAVR strongly
    supports adequate funding for all Sections of the Act.
                                     ______

         Prepared Statement of Donald W. Dew, Ed.D., CRC, Professor of
      Counseling, George Washington University, on Behalf of the National
                      Council on Rehabilitation Education
        The National Council on Rehabilitation Education (NCRE) is an
    organization of over 100 colleges and universities composed of
    educators, researchers, human resource development specialists, and
    graduate students who are dedicated to quality education and training
    for a variety of rehabilitation professionals. The members of NCRE
    prepare qualified vocational rehabilitation professionals proficient in
    assisting individuals with disabilities to obtain meaningful
    employment.
        I welcome the opportunity to submit testimony to this subcommittee
    to express the views of NCRE and to request that $50 million be
    appropriated in fiscal year 1998 in order to meet the critical need for
    qualified rehabilitation professionals.
        From its beginning in 1918, the vocational rehabilitation program
    in the United States has been a model of America's investment in
    itself. From its initial exclusive focus on veterans to its current
    priority on serving persons with severe disabilities, the vocational
    rehabilitation program has proven itself to be a cost-effective system
    that prepares people with disabilities for work and independence in the
    mainstream of society. During the majority of history, Congress wisely
    has augmented this investment by actively supporting the training and
    education of personnel to provide quality vocational rehabilitation
    services. Members of Congress have concluded that vocational
    rehabilitation services can be delivered to the 43 million Americans
    with disabilities in the most effective and efficient way by ensuring
    that the deliverers of those services are qualified professionals.
        Most persons with disabilities are able to work. More importantly,
    like the vast majority of Americans, most of them want to work.
    According to the recent Lou Harris poll, 8.2 million people with
    disabilities looking for work at the time would immediately trade all
    of their disability benefits for a full-time job. Mr. Chairman, NCRE
    believe that these individuals deserve the opportunity to make that
    kind of trade-off. It is not only the right thing to do for fellow-
    Americans, it is a giant step toward reversing policies that have
    resulted in our spending over $200 billion a year on ``dependency
    programs'' for individuals with disabilities, many of whom are highly
    motivated to become working taxpayers.
        People with disabilities have better employment outcomes when they
    have received assistance from qualified rehabilitation professionals.
    Rehabilitation professionals work cooperatively with people with
    disabilities to provide counseling and guidance, evaluation, and job
    placement. Job placement is the primary goal of the vocational
    rehabilitation process. It is crucial that Congress ensure an adequate
    supply of qualified rehabilitation professionals through sufficient
    appropriations for rehabilitation education.
        The Rehabilitation Services Administration has reported to Congress
    that for every $1 spent on rehabilitation services to return an
    individual with disability to employment, $18 in tax revenue to the
    Treasury is generated. Trained rehabilitation professionals provide
    better services for individuals with disabilities at a lower cost to
    the American taxpayers. In the 1992 Reauthorization of the
    Rehabilitation Act, Congress required states to use ``qualified''
    rehabilitation professionals to provide vocational rehabilitation
    services. This change was implemented to benefit individuals with
    disabilities who are served by graduates of rehabilitation education
    programs. Federal funds supplementing state and local resources have
    allowed rehabilitation education programs to be responsive to changes
    in the field and address severe acute and chronic manpower shortages.
    Meeting these needs requires a nationally coordinated comprehensive
    educational program and graduates of these programs help improve
    employment outcomes for people with disabilities.
        The United States Department of Education documented a critical
    shortage of qualified rehabilitation professionals nationwide. This
    shortage is exacerbated by the anticipated retirement of approximately
    30 percent of rehabilitation professionals over the next five years.
        Another challenge in the training of qualified rehabilitation
    personnel is the emphasis that RSA and rehabilitation education
    programs are placing on attracting students from traditionally under-
    represented populations. African-Americans, Hispanic Americans, Native
    Americans and students with disabilities are all being targeted for
    recruitment into the rehabilitation professions. Vocational
    rehabilitation agencies are serving increasingly diverse populations
    and it is critical that professional counselors reflect that diversity.
    Scholarship support serves as an extraordinarily effective tool to
    enhance recruitment of members of these under-represented groups.
        Mr. Chairman and members of the Subcommittee, the National Council
    on Rehabilitation Education appreciates this opportunity to testify
    that $50 million will be needed in fiscal year 1998. We are well aware
    of the challenge that Congress is under to reduce government costs.
    People with disabilities, along with many other Americans, share your
    frustration with the disproportionate spending on programs that promote
    dependence instead of that independence that comes with employment. We
    believe that an investment in rehabilitation education to increase the
    number of qualified rehabilitation professionals is the most cost-
    effective means to providing high quality services in the most fiscally
    responsible way possible.
        Thank you very much for this opportunity to share our concerns and
    recommendations.
                                     ______

          Prepared Statement of the National Aging and Vision Network
        The National Aging and Vision Network is comprised of individuals
    and representatives of public and private agencies that provide vision
    rehabilitation services to persons who are older and blind, who reside
    in all 50 states, the District of Columbia, and the territories. Formed
    in 1994, the Network's goal is to increase the availability of
    responsive, high quality services for older individuals who are blind
    or severely visually impaired through the vision-related rehabilitation
    system, the aging network, and the health care system. Network members
    collaborate on advocacy efforts, share vital information on service
    delivery mechanisms, work to develop outcome measures and to develop
    and maintain funding resources to support essential services.

    Rehabilitation services independent living services for older
    individuals who are blind (title VII, chapter 2)

                            [In millions of dollars]

    Fiscal year:
        1996 appropriation............................................  8.95
        1997 appropriation............................................  9.95
        1997 authorization...........................................( \1\ )
    Department of Education fiscal year 1998 request..................  9.95
    NAVN fiscal year 1998 recommendation..............................  52.0

    \1\ Formula grant.

    Justification
        There are over 4 million individuals in the country age 55 or over
    who are experiencing severe vision loss. This number has doubled in the
    last 30 years, and is expected to double again by 2030. These are not
    just numbers; these are our parents or grandparents who are
    experiencing difficulty adjusting to vision loss.
        Prevalence of severe visual impairment is age-related. Prevalence
    of severe visual impairment is 47 per 1000 in individuals 65-74. By age
    85, one in four older people cannot read a newspaper with best
    corrected vision. Loss of vision dramatically effects the older
    person's ability to do other everyday tasks as well.
        However, through the funds currently available, agencies are still
    only reaching 5 percent of the individuals who are older and blind who
    need services to continue to live productive and independent lives.
        We urge you to take this opportunity through this appropriation to
    continue to build on a first for this country, that is, a nationwide
    service delivery program which delivers what it promises and which
    truly makes a significant difference in the lives of older individuals
    who are blind, and who without these services are among our nation's
    most vulnerable citizens.
    Background
        Under the 1992 reauthorization of the Rehabilitation Act, Congress
    provided the mechanism to establish a nationwide service delivery
    system for individuals who are older and blind. They acted to change
    the existing law to allow formula funding of programs for older blind
    persons. However, this formula will not trigger until the appropriation
    level reaches $13 million. With an appropriation of $13 million, each
    state would receive a minimum of $225,000.
        We have found that this appropriation will not adequately meet the
    needs of individuals who are older and blind. We are asking that the
    appropriation level be increased from the current $9.9 million to $52
    million. With the higher figure, states with larger populations of
    older individuals would receive proportionate amounts. This increase
    would ensure that older persons who are blind, and who live in any
    state or territory, will have the same access to vision-related
    rehabilitation services.
        Since its first funding in 1986, this program has been one of the
    most successful and cost-effective programs initiated by Congress. In
    1995-96, the grantee states used the funds to deliver services to over
    22,000 older individuals at an approximate cost of $500-$600 per
    person. The number of people served through this program has increased
    60 percent over the last three years, since a mechanism was established
    for minimum funding of $160,000 for each state.
        As documented in program evaluations and countless testimonials,
    Chapter 2-funded services have enabled older individuals who become
    blind to continue to live independently in their own homes and
    communities. The program has helped these older individuals to regain
    self-confidence, self-reliance, and self-worth by providing them the
    opportunity to learn the skills needed to perform the most basic tasks
    of daily living and to remain active and contributing members of their
    communities for as long as possible.
        The types of services provided by grantee states include: training
    in how to travel safely; communications skills; training in activities
    of daily living skills; low vision services and adaptive devices;
    individual counseling; counseling and supportive services to family
    members; and community integration. The goal of all of the services is
    to reduce the need for costly support services, such as in-home and
    community-based long-term services, and/or premature nursing home
    placement.
      --The program serves individuals who are newly blinded and have no
            where else to turn to obtain vision-related rehabilitation
            services.
      --Chapter 2 funded services are cost-effective.
        Tax dollars are directed toward helping individuals maintain or
    regain independent functioning and productivity, rather than costly in-
    home services or nursing home care.
        With timely and appropriate intervention, the need for such care
    has been averted or delayed as has been indicated in a number of states
    in which independent living services are provided. This intervention
    results in extreme cost savings to the states and federal government.
    Provision of support services in the home through aging network
    programs or home-health agencies is costly.
        The cost of providing independent living services on a one-time
    basis averages from $500 to $600 per person. In these difficult
    financial times for long term support services we need to do everything
    we can to insure that people can continue to live independently.
        There is no other national service delivery program for older
    individuals who are blind.
        Funds for vision-related rehabilitation services for older people
    who are blind are not provided through the Older Americans Act, through
    Medicare, Medicaid, or any other consistent funding mechanism. State
    rehabilitation agencies for the blind are the most logical service
    providers or brokers.
                                     ______

      Prepared Statement of Lynne P. Brown, Associate Vice President for
     Government and Community Relations, on Behalf of New York University
               Center for Cognition, Learning, Emotion and Memory
        Research into cognition, learning, emotion, and memory can help
    educators, physicians, and other health care givers, policymakers, and
    the general public by enhancing our understanding of normal brain
    development as well as the many disabilities, disorders, and diseases
    that erode our ability to learn and think, to remember, and to emote
    appropriately.
        New York University is seeking $10.5 million over five years to
    establish at its Washington Square campus a Center for Cognition,
    Learning, Emotion and Memory. The program will draw on existing
    research strengths in the fields of neural science, biology and
    chemistry, psychology, computer science, and linguistics to push the
    frontiers of our understanding of how the brain functions, and how we
    learn.
        Such exploration into the fundamental neurobiological mechanisms of
    the nervous system has broad implications for human behavior and
    decision making as well as direct applicability to early childhood
    development, language acquisition, teaching methods, computer science
    and technology development for education, the diagnosis and treatment
    of mental and memory disorders, and specialized training for stressful
    occupation.
    Cognition, Learning, Emotion and Memory Studies at NYU (CLEM)
        New York University is poised to become a premier center for
    biological studies of the acquisition, storage, processing and
    retrieval of information in the nervous system.
        To be housed at NYU's Washington Square Campus within the Center
    for Neural Science, the new Center will capitalize on the university's
    expertise in a wide range of related fields that encompass our computer
    scientists who use MRI imaging for research into normal and
    pathological mental processes in humans, our vision scientists who are
    exploring the input of vision to learning and memory, our physical
    scientists producing magnetic measurements of brain function with a
    focus on the decay of memories, our linguists studying the relation of
    language and the mind, and our psychiatrists conducting clinical
    studies of patients with nervous system disorders.
        The New York University Program in Cognition, Learning, Emotion and
    Memory (CLEM) focuses on research and training in the fundamental
    neurobiological mechanisms that underlie learning and memory--the
    acquisition and storage of information in the nervous system. Current
    studies by the faculty at NYU are determining why fear can facilitate
    memory; how memory can be enhanced; what conditions facilitate long-
    term and short-term memory; and where in the brain all these memories
    are processed and stored. The research capacity of this Center
    capitalizes on our expertise in physiology, neuroanatomy, and
    behavioral studies, and builds on active studies that range from the
    mental coding and representation of memory to the molecular foundations
    of the neural processes underlying emotional memories. Our faculty use
    electrophysiological and neuroanatomical techniques to study the
    organization of memory in the medial temporal lobe. Together these
    researchers bring substantial strength in psychological testing,
    computational sophistication, advanced tissues staining and electrical
    probes, and humane animal conditioning. These core faculty are well
    recognized by their peers and have a solid track record of sustained
    research funding from federal agencies and private foundations: total
    costs awarded and committed for their research for full project periods
    from all sources presently total $7 million. Additional faculty are
    being recruited in areas of specialization that include: the cellular
    and molecular mechanisms operative in neural systems that make
    emotional memory possible, neurophysiological studies of memory in non-
    human primates, computational modeling of memory, and
    neuropsychological and imaging research on normal and pathological
    human memory.
        Colleagues in the Biology Department are doing related work in the
    molecular basis of development and learning. Given the important input
    of vision to learning and memory, the Center has strong links with the
    many vision scientists based in the Psychology Department who work on
    directly related topics that include form, color, and depth perception,
    memory and psycholinguistics. Colleagues in behavioral science study
    learning and motivation, memory and aging. Physical scientists explore
    the magnetic measurement of brain function, with a focus on the decay
    of memories. CLEM also shares research interests with colleagues in the
    Linguistics Department, who study the relation of language and the
    mind.
        Research linkages extend to computational vision studies, now
    centered in NYU's Sloan Program in Theoretical Neurobiology. The Sloan
    Program works closely with computer scientists at our Courant Institute
    on Mathematical Science, with colleagues at the Medical Center in
    Psychiatry, who use MRI imaging for research into normal and
    pathological mental processes in humans, and in Neurobiology, who are
    conducting clinical studies of patients with nervous disorders,
    especially memory disorders.
        What is unique and exciting about the establishment of such a
    comprehensive center at NYU is the opportunity to tap into and
    coordinate this rich multidisciplinary array of talent to conduct
    pioneering research into how the brain works. In this, the ``Decade of
    the Brain,'' NYU is strategically positioned to be a leader.
    Early childhood and education
        Research into the learning process as it relates to attention and
    retention clearly holds important implications for early childhood
    development. Although most of a person's brain development is completed
    by birth, the first few years of life are critically important in
    spurring intellectual development. For example, research has already
    shown that in their early years, children need human stimulation, such
    as playing and talking, to develop the ability to learn.
        With more immigrant children in schools, language development is
    another crucial area of study. If a child's brain were more receptive
    to acquiring sounds during the first few months of life, and language
    in the first few years of life, then students may learn a second
    language more quickly if taught in the lower grades instead of waiting
    for high school.
        In the midst of a national debate on education reform, thousands of
    education innovations are being considered without the advantage of a
    fundamental understanding of the learning process. CLEM researchers,
    coupled with educational psychologists, can contribute to a better
    understanding of how parents can stimulate their children's cognitive
    growth, how children learn at different stages and use different
    styles, how educators can accommodate those styles, and how educational
    technology can be harnessed to increase retention and memory.
        At NYU, these efforts will be enhanced by our scholars and research
    conducted in our School of Education and our New York State-supported
    Center for Advanced Technology.
    Computer science and technology development
        As we refine our knowledge of how the brain acquires, processes,
    retains and retrieves information and images, we will also be able to
    improve the design, development and utilization of computer science and
    technology. As we reach a better understanding of how children learn,
    we can more effectively harness computer technology in the service of
    education.
        At NYU, this effort is enhanced by the presence of our New York
    State-supported Center for Digital Multimedia, Publishing and
    Education, which brings together educators, laboratory scientists and
    software designers who explore how interactive multimedia technologies
    enhance learning and develop prototype teaching models.
    Specialized training
        Research into how cognition and emotion interact can have
    applicability to other diverse areas of interest including retraining
    of adult workers, job performance and specialized training for high
    risk or stressful jobs such as military service and emergency rescue
    work.
                                     ______

     Prepared Statement of Dr. Ann Marcus, Dean, School of Education, New
                                York University
        Strong and sustained support is needed for the healthy development
    of children throughout American society. Without such support, we
    cannot expect to meet the demands of the future or provide the
    opportunities that young people need to function as productive
    citizens.
        When we speak of support, however, we know that money is not
    enough. It is crucial that every form of support aim at strengthening
    the vision, capacity, and quality of the multiple institutions helping
    to build the lives of young people. Governments, universities,
    professional organizations, business and industry, and community
    organizations of all kinds needs to find better ways of working
    together to increase the quality of services provided to young
    children.
        New York University is firmly committed to the improvement of
    social services and educational opportunities for the young. The
    challenge can be met only by learning from past experience and bringing
    new knowledge and insight as well as more productive forms of
    collaboration and quality enhancement into the delivery of crucially
    needed support for early development in children's lives. Our
    experience in research, professional preparation, and program delivery
    over several decades has illuminated several ingredients required for
    successful efforts to assist young children through programs designed
    for their benefit:
      --Flexible and responsive technical assistance, shaped by community
            and family needs while at the same time informed by the best
            research and professional standards, is essential for
            strengthening local capacity for designing and managing
            effective programs.
      --Programs aiming to provide greater support for child development
            must embody built-in strategies of continuous improvement, not
            only in terms of quality enhancement focusing on services and
            outcomes, but also generating better understanding of how to
            activate community and institutional partnerships in support of
            children and families.
      --University-based efforts to coordinate services for children offer
            special promise for integrating research and practice,
            clarifying professional standards while improving service
            delivery, utilizing the comprehensive disciplinary mix and
            technological resources available in an intensely collaborative
            and creative environment, and fostering shared vision and
            purpose across sectors within a framework that emphasizes a
            growing knowledge base along with cooperative inquiry and
            dialogue attuned to community needs.
      --Programs focusing on early childhood development need to be well
            designed to provide a solid foundation for the child's
            transition to school, making connections between success in
            overcoming obstacles during the first years of cognitive,
            emotional and social growth, and continued success in the first
            years of formal schooling and beyond. Special attention needs
            to be given to learning problems as disabilities in the lives
            of many children, all of whom have the potential for sustained
            development and productive lives when their needs are properly
            addressed.
    New York University's Head Start Programs
        In spring 1997, the New York University School of Education will
    submit a renewal application to the U.S. Department of Health and Human
    Services, Administration for Children and Families, for two Head Start
    programs: the Region IIa Head Start Technical Assistance Support Center
    (TASC) and the Resource Access Project (RAP). New York University has
    held both of these contracts since their origination (TASC in the late
    1960s, RAP in the late 1970s). The TASC serves Head Start programs in
    New York and New Jersey; the RAP serves Head Start programs in both
    states and in Puerto Rico and the U.S. Virgin Islands.
        New York University has a long, outstanding record in managing the
    Region IIA Technical Assistance Support Center and the Resource Access
    Project and expects to succeed in renewing its contracts with the
    Administration for Children and Families and continue its work with the
    Region's Head Start Programs. Factors which support the University's
    excellent record include:
      --A dedicated, highly trained professional staff, many of whom have
            been with their projects for over ten years and know thoroughly
            how to assess the needs of the Region's Head Start programs and
            respond to those needs effectively and in a timely manner.
      --Well-established consultant networks, carefully recruited and
            selected by the NYU staff and approved by the DHHS Regional
            Office. The consultants, who reside throughout Region II, work
            during the year to provide site-specific services to Head Start
            program directors, staff, children and families as needed. The
            TASC and the RAP staffs each maintain a pool of over 120
            consultants who may be called into service.
    A Strong Commitment to Early Childhood Development
        New York University plays a growing role in assisting agencies,
    organizations, communities and families to improve opportunities for
    child development and education. In addition to its outstanding and
    wide array of academic programs, the School of Education currently
    sponsors a number of early childhood projects and initiatives, many of
    which receive substantial funding from public and private sources.
    These initiatives include:
      --An Early Childhood Faculty Workgroup, representing several
            departments in the School of Education and faculty members from
            the NYU School of Social Work and Wagner School of Public
            Service. Under the direction of Dr. LaRue Allen, Professor and
            Chair of the Department of Applied Psychology, the faculty
            group meets regularly to discuss issues in early childhood
            development and education, including Head Start, child care
            programs and pre-kindergarten programs. The faculty members are
            currently designing several research studies and service
            delivery demonstration projects and will seek external funding
            next spring. Dr. Edward Zigler, Professor at Yale University
            and one of the major figures in Head Start and early childhood
            development, has agreed to work with the Early Childhood
            Faculty Workgroup as a senior consultant and will assist with
            project design and developing collaborations with other
            researchers and networks in the United States.
      --An Early Intervention Faculty Workgroup, also representing several
            departments in the School of Education and faculty members from
            the Rusk Institute of Rehabilitation Medicine, NYU Medical
            Center. This faculty group focuses on the needs of children
            with disabilities (ages 0-2) and their families, and is
            currently conducting a research study on the effectiveness of
            interdisciplinary delivery of home-based services to infants
            with special needs and their families.
      --As previously mentioned, New York University's School of Education
            houses two federally-funded technical assistance programs which
            serve the Head Start programs in federal Region II. The Region
            IIa Head Start Technical Assistance Support Center (TASC)
            provides technical assistance and training to staff in all Head
            Start programs in New York and New Jersey. The Resource Access
            Program (RAP) provides technical assistance and training to
            Head Start staff in all programs in New York, New Jersey,
            Puerto Rico and the U.S. Virgin Islands. These two programs,
            funded by the DHHS Administration for Children and Families,
            have been awarded to New York University for over twenty years.
      --Faculty in the School of Education's Department of Teaching and
            Learning (Dr. Frances Rust and Dr. Margot Ely), in
            collaboration with the School's Metropolitan Center for Urban
            Education (Dr. LaMar Miller), are currently conducting a
            professional development project for staff in four large Head
            Start Centers in New York City. This multiyear demonstration
            project is funded by the Robin Hood Foundation.
      --Other early childhood projects in the School of Education include a
            personnel training project in early childhood special
            education, funded by the U.S. Department of Education's Office
            of Special Education and Rehabilitative; a research study on
            the need for aloneness in infants; and a longitudinal study of
            relationships between the mother-infant dyad and cognitive
            development in infants.
        In summary, this nation must strengthen its commitment to children
    with continuous improvement of education and services for the young.
    New York University intends to devote its resources--through research,
    teaching, training, technical assistance, and professional service--to
    the greatest extent possible to expanding and strengthening available
    opportunities for healthy development, successful learning, and
    productive lives for the nation's young.
        As early childhood with all its promise and peril rises on the list
    of the nation's priorities, NYU is growing in strength and reputation
    in this arena. Indeed, NYU has emerged as a major center of research
    and training across the spectrum of fields--education, psychology,
    nutrition, medicine--that bear upon children from birth to the early
    grades. NYU's Head Start Technical Assistance Support Center (TASC) and
    Resource Access Project (RAP) reside at the heart of the academic
    enterprise--and they draw from it in highly productive ways as they
    connect with communities and agencies and organizations engaged in the
    quest for quality improvement in Head Start and other services for the
    young. NYU is committed to the further expansion of early childhood
    initiatives and looks forward to working in partnership with the
    federal government toward that end.
                                     ______

    Prepared Statement of Charles L. Calkins, National Executive Secretary,
                           Fleet Reserve Association
    Introduction
        Mr. Chairman. The Fleet Reserve Association (FRA) appreciates the
    opportunity to offer this distinguished Subcommittee its views on
    Impact Aid to school districts providing educational programs for the
    children of members of the Uniformed Services.
        FRA is a Congressionally Chartered organization with a membership
    of more than 162,000 men and women of the Navy, Marine Corps, and Coast
    Guard. It is the only military organization exclusively representing
    more than 500,000 active duty enlisted personnel of the Sea Services.
    It is estimated that greater than 60 percent are married and that 50
    percent have school-age children. Impact Aid is one of their major
    concerns.
    Public Law 103-382
        Public Law 103-382, Section 8001, provides ``financial assistance
    to local educational agencies in order to fulfill the Federal
    Government's responsibility to assist with the provision of educational
    services to federally connected children, because certain activities of
    the Federal Government place a financial burden on the local education
    agencies.'' The meaning of those words has not strayed far from the
    language in the statute's predecessor, Public Law 81-874--to provide
    financial assistance to school districts upon which the government
    placed a financial burden. That burden existed then, and continues to
    exist in school districts experiencing heavily-impacted enrollments of
    military-sponsored children.
        Impact Aid legislation was first enacted exclusively to assist in
    educating the children of military personnel and federal employees
    enrolled in local schools on or near military/federal installations.
    Over the years, other classes of children have been added, but
    appropriations have failed to match the increases. The result has been
    a strain on the amount of federal funds available for impacted school
    districts.
    Classes of Military-Sponsored Students
        More than 2,300 schools in nearly 400 districts are affected by the
    impact of 545,000-plus enrolled military-sponsored children. Due to the
    numbers, FRA is concerned that the quality of education provided these
    children may be deteriorating, not because of the declining efforts of
    teaching professionals, but because of reductions in annual fundings of
    Impact Aid for both ``a'' and ``b'' categories of students. Category
    ``a'' students have military parents living and working on a military
    installation. Category ``b'' have parents either working or living on
    the installation, but not both.
        Repeated attempts have been made to terminate payments to category
    ``b'' students. Again this year President Clinton's fiscal year 1998
    request contains no funds for the ``b'' students. In her prepared
    statement before the applicable House subcommittee, the Department of
    Education's Assistant Secretary for Elementary and Secondary Education
    said of Impact Aid funding: ``Our request would provide school
    districts funding (for) two categories of federally connected children
    that create the greatest financial burden on school districts--children
    living on Indian lands and the children of members of the uniformed
    services who live on Federal property.'' (Emphasis Added)
        The reason most often cited is that the parents of ``b'' students
    are paying taxes because they reside in the civilian community. This is
    partially true. However, no matter how much tax revenue is gained or
    lost, military personnel are protected by the Soldiers' and Sailors'
    Civil Relief Act (SSCRA). Non-resident military parents are not
    required to pay local or state income taxes or personal property taxes.
    So the reduction or termination of category ``b'' payments robs the
    school districts of needed funds to provide quality education for both
    military and civilian-sponsored students.
    Concern for Funding
        The funds requested for fiscal year 1998 by the Administration to
    assist in educating military-sponsored children total $658 million.
    This is not anywhere near the $850 to $900 million needed to get the
    job done. More alarming to military parents is the fact that the
    Administration's request covers school districts heavily impacted with
    children living on Federal lands, as well as those with military-
    sponsored children.
        For more than two decades, beginning with the Nixon Administration,
    one President after another attempted to decrease funds for Impact Aid
    to school districts educating the children of members of the Uniformed
    Services. Most disturbing about President Clinton's fiscal year 1998
    budget request, is that it asks for less Impact Aid funding despite his
    claim that education is the Administration's number one priority.
    President Clinton's ``Call to Action for American Education in the 21st
    Century'' expresses little concern for the education of military-
    sponsored children for the coming fiscal year.
        In 1995, the Defense Science Board Task Force on Quality of Life
    discovered that military families ``are fully aware of the Impact Aid
    Program and its intent. (Military) Families believe Impact Aid not only
    assists the (school) districts they are forced to use, but also helps
    to ensure that local (school) districts address the needs ot the
    military child.'' They are troubled when funds come under attack or
    learn that the Administration has requested less money than needed to
    provide the resources to educate their children.
    Military's Impact on School Districts
        Of significance is the location of a great number of Navy and some
    Marine Corps active duty families. They are assigned to heavily-
    impacted military installations such as those in San Diego and Norfolk,
    Virginia, this, in turn, produces heavily-impacted school districts.
        San Diego is an excellent example of the impact on local school
    districts. Due to lack of space, only token family housing is available
    on military installations in and near the city. Federal housing is
    located off the insatllations so military personnel assigned to that
    area must use local schools for the education of their children.
    Minimal local taxes may be collected for the school districts because
    the housing could be considered federal property. School districts thus
    have no choice but to rely heavily on congressionally appropriated
    Impact Aid funds.
        Some school districts, short of Impact Aid funds, have attempted to
    force military personnel who have children enrolled to pay tuition.
    This resulted in the Department of Defense filing law suits to require
    applicable school districts to continue educating the children
    regardless of the cost or shortage of funds.
        The Base Realignment and Closures Commission (BRAC) actions and the
    ``downsizing'' of military personnel contribute to the misconception
    that there is justification to decrease funds for Impact Aid. Another
    misconception is that there is no rationale to commit taxpayers' money
    for the education of children whose military parents live off federal
    installations. These misunderstandings leave many impacted school
    districts struggling for ways to meet rising budgets.
    The Need for Increased Appropriations
        FRA firmly supports enhanced education programs for all the
    Nation's citizens, but not at the expense of the children of our
    Sailors, Marines, and Coast Guard personnel. The defense of the Nation
    and its citizens, and the sustainment of the freedom to live in a
    Country devoted to education, rests with the military students' parent-
    sponsors serving in the U.S. Armed Forces.
        These men and women endure personal sacrifices to carry out the
    missions assigned by their Commander-in-Chief, the President of the
    United States. As the Chairman, House National Security Committee,
    recently stated: ``Soldiers, Sailors, Airmen, and Marines are working
    harder and longer to execute their peacetime missions due to an
    inherent tension between personnel and resource shortages and an
    increased pace of operations. Military personnel and their families are
    paying an increasingly higher human price from repeatedly being asked
    to `do more with less'.'' The current personnel tempo they are
    sustaining would cause the average citizen-employee to throw up his or
    her hands and walk off the job.
        The military has reduced its troop strengths, nearly 30 percent
    since 1989. Still the number of operations involving military personnel
    have not decreased concurrently to offset the loss. Desert Shield,
    Desert Storm, Somalia, Haiti, Bosnia are but a few of the larger
    operations that have kept, or are now keeping troops on the move and
    away from their families over extended periods.
        More than 50 percent of the Navy is at sea or deployed at any one
    time. Marines can expect to be deployed 50 percent of their time in the
    Corps, or longer if stationed in Hawaii. The Coast Guard has more
    operational commitments than it has personnel on the active duty
    roster.
        The down-sizing of the military, the closing or realignment of
    military installations and Presidential recommendations endorsed by
    Congress, dictate much of the increased tempo resulting in longer
    family separations leaving one spouse to often act as a single parent.
    These actions jeopardize the morale of both parents and create anxiety
    and concern among their children.
        One of the military's top enlisted chiefs stated that his troops
    could withstand the increased personnel tempo as long as they know
    their families are being well-cared for by the very Government sending
    them away from their loved ones for months at a time. FRA implores that
    Congress, which is Constitutionally-charged with raising an army and
    navy for the defense of the nation, will do its best to keep the morale
    of Service personnel at the highest level of readiness. It could begin
    here by adding to the President's Impact Aid appropriations request. A
    significant amount is needed to relieve the concern military parents
    have for their children's well-being and future education.
        The Association gratefully acknowledges the interest and support of
    this distinguished Subcommittee in past years in correcting the
    shortfall-requests for Impact Aid funds.
                                     ______

    Prepared Statement of George A. Zitnay, Ph.D., President and CEO, Brain
                            Injury Association, Inc.
        Dear Mr. Chairman and Members of the Senate Appropriations
    Subcommittee on Labor, Health and Human Services, Education and Related
    Agencies:
        Thank you for allowing me the opportunity to submit testimony on
    behalf of the Brain Injury Association, Inc. for the record. My name is
    George A. Zitnay, Ph.D., and I am the President and Chief Executive
    Officer of the Brain Injury Association. My testimony focuses on the
    Traumatic Brain Injury (TBI) Model Systems under the National Institute
    on Disability and Rehabilitation Research (NIDRR) with the Department
    of Education.
        There is a strong need to expand this program from the limited
    number of four sites to a more appropriate number of 12 to 15. Funding
    of $7 million, the same as that which is provided for Spinal Cord
    Injury Model Systems, is needed for this important program in fiscal
    year 1998. Significant advances in care have been developing as a
    result of the TBI Model Systems, and additional systems are urgently
    needed to assist more states in implementing service systems for people
    with TBI.
        Below is background information on brain injury, the Brain Injury
    Association and the work of the TBI Model Systems:
    Brain injury
        Traumatic brain injury is defined as an insult to the brain, not of
    a degenerative or congenital nature but caused by an external physical
    force, that may produce a diminished or altered state of consciousness,
    which results in an impairment of cognitive abilities or physical
    functioning. It can also result in the disturbance of behavioral or
    emotional functioning.
        Traumatic brain injury has become the number one killer and cause
    of disability of young people in the United States. Motor vehicle
    crashes, sports injuries, falls, and violence are the major causes of
    traumatic brain injury. Long known as the silent epidemic, TBI can
    strike anyone--infant, youth or elderly person--without warning and
    with devastating results. Traumatic brain injury affects the whole
    family and often results in huge medical and rehabilitation expenses
    over a lifetime.
        An estimated 1.9 million Americans experience traumatic brain
    injury each year. Incidence is highest among younger adults. A major
    disability like TBI has a profoundly disorganizing impact on the lives
    of individuals and their families. Questions involving community,
    family, and vocational-restoration, as well as concerns about future
    happiness and fulfillment are common. (Banja, J. & Johnston, M.
    ``Ethical Perspectives and Social Policy,'' Archives of Physical
    Medicine and Rehabilitation, Vol. 75, SC-19, December, 1994). Even
    individuals who have integrated well into society experience adverse
    psychosocial effects. Employment instability, isolation from friends,
    and increased need for support are a few of the problems encountered by
    individuals with TBI. Families often function as the primary support
    system for individuals with TBI after discharge from acute care. There
    is a clear and compelling need for research to develop family treatment
    strategies and explore their effect on outcomes for individuals with
    TBI.
    The Brain Injury Association
        The Brain Injury Association, is a national, non-profit advocacy
    organization dedicated to improving the lives of persons with brain
    injury, as well as promoting research, education and prevention of
    brain injuries. It is composed of individuals with traumatic brain
    injury, their families, and the professionals who serve them. What
    began as a small group in a mother's kitchen has blossomed into a
    national organization with 44 state associations, over 400 local
    support groups and thousands of individual members.
    The Traumatic Brain Injury Model Systems Program
        In 1987, the National Institute on Disability and Rehabilitation
    Research (NIDRR) provided funding to establish TBI Model Systems of
    Care. These research and development projects focused primarily on
    developing and demonstrating a comprehensive, multidisciplinary model
    system of rehabilitative services for individuals with TBI, and
    evaluating the efficacy of that system through the collection and
    analysis of uniform data on system benefits, costs, and outcomes.
    NIDRR's multi-center model systems program is designed to study the
    course of recovery and outcomes following the delivery of a coordinated
    system of care including emergency care, acute neuro-trauma management,
    comprehensive inpatient rehabilitation, and long-term interdisciplinary
    follow-up services.
        The TBI Model Systems serve a substantial number of individuals,
    allowing the projects to conduct clinical research and program
    evaluation, which maximize the potential for project replication. In
    addition, the TBI Model Systems have the advantage of a complex data
    collection and retrieval program with the capability to analyze the
    different system components and provide information on project cost
    effectiveness and benefits. Information is collected throughout the
    rehabilitation process, permitting long-term follow-up on the course of
    injury, outcomes, and changes in employment status, community
    integration, substance abuse and family needs. The TBI Model Systems
    projects serve as regional and national models for program development
    and as information centers for consumers, families and professionals.
        On March 4, 1997, NIDRR issued a notice of proposed priorities in
    the Federal Register, for fiscal years 1997 and 1998 for research and
    demonstration projects, rehabilitation research and training centers,
    and a knowledge dissemination and utilization project. The TBI Model
    Systems project was included in NIDRR's proposed priorities. It is the
    Brain Injury Association's understanding that NIDRR received a record
    number of comments in response to this notice. Most commenters
    requested an increase in the number of TBI Model Systems sites and in
    funding for the program.
        In the notice, NIDRR acknowledged that the health care costs
    associated with TBI are staggering, and stated ``[i]n view of current
    scrutiny of all health care spending, which may result in pressures to
    constrict or deny rehabilitation care to individuals with traumatic
    brain injury, it is important to gather information on the efficacy and
    cost-effectiveness of various treatment interventions and service
    delivery models. Credible outcome monitoring systems are needed to
    establish guidelines by which fair compromises can be reached (citing
    Johnston, M. & Hall, I. ``Outcomes Evaluation in TBI Rehabilitation,''
    Part I: Overview and System Principles, ``Archives of Physical Medicine
    and Rehabilitation,'' Vol. 75, December, 1994). NIDRR continued, ``a
    greater emphasis on outcomes measurements and management will foster
    the gathering of information on efficacy and cost-effectiveness.''
        The TBI Model Systems Program continues to maintain a unique role
    by collecting essential information:
      --nature and intensity of rehabilitation services (acute trauma
            through community integration);
      --costs and benefits of rehabilitation services to persons with
            differing characteristics;
      --circumstances and severity of injury;
      --information on community integration, especially regarding
            vocational outcome and quality of life;
      --data on multiple concussions in sports;
      --annual lifetime follow-up.
        The program also emphasizes widespread dissemination of findings
    through publications, conferences, and development of Internet
    resources.
        In addition to addressing specific research questions, TBI Model
    Systems provide individualized services to those with TBI and their
    families especially after discharge from rehabilitation, such as
    community referrals, peer support and outpatient therapy.
        While the incidence of severe TBI related to vehicular crashes has
    leveled off, interpersonal violence continues to increase and has
    become a primary cause of TBI, as well as the prevalence of multiple
    concussions in sports. Each year, an increasing number of new persons
    with brain injury are followed; the data collection and quality
    assurance resources necessary for lifetime follow-up has increased
    exponentially. Considering the inclusion of new persons in the data
    base each year, more and more resources will be necessary for long term
    follow up.
        Additional centers are needed to speed up the accumulation of data,
    which is important given the impact on the health care system due to
    managed care. The current number of centers is small relative to the
    incidence of TBI in this country. Increased funding is necessary since
    the level of funding has not changed since the initial awards were made
    a decade ago, and there is an increasing burden on each center to meet
    goals with essentially less funding each year.
        With more resources, the TBI Model Systems would be better able to
    accomplish the following:
      --determine the effects of managed care and how reduced lengths of
            stay and reduced services affect outcomes and long term costs
            for persons with TBI;
      --develop more effective employment programs to reduce the 75 percent
            unemployment level which exists for at least the first four
            years following injury. This effort would help reduce the cost
            of public assistance programs;
      --develop and evaluate new neuromedical treatment strategies which
            could prevent the occurrence or impact of early and late
            medical complications and reduce costs;
      --develop targeted interventions to accommodate unique needs of
            minorities, thereby reducing the social and economic costs of
            violent brain injury;
      --establish clear decision rules to triage to traditional and
            alternative programs with a full analysis of costs and
            benefits; and
      --increase access to information through the Internet--TBI Model
            Systems Web Site.
        The Brain Injury Association is aware of numerous sites, in over 14
    states, that would be interested in establishing additional TBI Model
    Systems, and some that might coordinate with a few of the 18 existing
    Spinal Cord Injury sites. The incidence of traumatic brain injury is
    substantially greater than that of spinal cord injury and the number of
    facilities to meet the needs of people with TBI should appropriately
    reflect this fact.
        I respectfully request that you consider the needs of persons with
    traumatic brain injury and their families and expand the TBI Model
    Systems program to 12 to 15 sites, funded by $7 million in fiscal year
    1998.
        Thank you for your continued support for this important program. I
    appreciate your time and attention in assuring that an appropriate
    expansion may be fully realized.
                                     ______

          Prepared Statement of the American Foundation for the Blind
    Introduction
        The mission of the American Foundation for the Blind is to enable
    persons who are blind or visually impaired to achieve equality of
    access and opportunity that will ensure freedom of choice in their
    lives. AFB accomplishes this mission by taking a national leadership
    role in the development and implementation of public policy and
    legislation, informational and educational programs, diversified
    publications, and quality services.
        In light of the recent reauthorization and restructuring of the
    Individuals with Disabilities Education Act (IDEA) (Public Law 105-17),
    we felt it important to supplement our recommendations for fiscal year
    1998 appropriations to the Subcommittee on Labor, Health and Human
    Services, Education and Related Agencies. The following recommendations
    particularly reflect the reorganization of the discretionary programs
    in IDEA and supplement the Statement for the Record previously filed by
    the American Foundation for the Blind on May 1, 1997 (copy attached).
        As in our previous statement, this document is presented in tabular
    summary form to facilitate its readability. Additional information to
    substantiate the rationale for each of the funding recommendations will
    be furnished to the Subcommittee upon request.
                  individuals with disabilities education act
        When IDEA was first enacted as the Education for All Handicapped
    Children Act (Public Law 94-142), Congress promised the states that
    Part B, the State Grant section, would ultimately provide 40 percent of
    the average per pupil expenditures. That goal has never been met.
    However, AFB is genuinely pleased to hear that many Members of Congress
    this year are interested in large increases to Part B of IDEA to bring
    the appropriated amount closer to that figure. We hope that, should new
    money become available for IDEA, increases will be made to all
    deserving programs under the statute rather than all increases being
    added to Part B. Increases to the Infants and Toddlers program (Part
    C), the Preschool program (Section 619), and the support programs in
    the new Part D are also of great importance to students who are blind
    or visually impaired. Technology development, personnel training to
    address shortages in the field, video description, and early
    intervention for blind or visually impaired infants and toddlers to try
    to avoid additional expenses at a later age are all urgently needed.

        Infants and toddlers with disabilities (part C, formerly part H)

                                  [In millions]

    Fiscal year:
        1996 appropriation............................................$315.8
        1997 appropriation............................................ 315.8
        1998 authorization............................................ 400.0
    President's fiscal year 1998 request...........................\1\ 324.0
    AFB fiscal year 1998 recommendation............................\1\ 400.0

    \1\ The fiscal year 1996 and fiscal year 1997 appropriations numbers are
    based upon the previous IDEA statute, prior to reauthorization. The
    President's fiscal year 1998 and the AFB 1998 recommendations are based
    upon the newly reauthorized and restructured IDEA.

        We believe that the full authorization level of $400 million for
    fiscal year 1998, as found in the Individuals with Disabilities
    Education Act Amendments of 1997 (Section 645), should be appropriated
    for this program. The number of children served under the Infants and
    Toddlers program has increased from 150,000 to 190,000 over the last
    four years with no parallel increase in appropriations. The success
    rate of this program and its early intervention focus in enhancing the
    development of infants and toddlers with disabilities, including those
    who are blind or visually impaired, and the capacity to meet their
    needs has been proven. The money to expand the program is necessary and
    well spent.

                         Preschool grants (section 619)

                                  [In millions]

    Fiscal year:
        1996 appropriation............................................$360.4
        1997 appropriation............................................ 360.4
        1998 authorization............................................ 500.0
    President's fiscal year 1998 request.............................. 374.8
    AFB fiscal year 1998 recommendation............................... 500.0

        We believe that the full authorization level of $500 million for
    fiscal year 1998, as found in the Individuals with Disabilities
    Education Act Amendments of 1997 (Section 619(j)), should be
    appropriated for this program. The number of children served under the
    Preschool program has increased from 491,000 to 577,000 over the last
    four years with no parallel increase in appropriations. The ability of
    schools to provide a free appropriate public education to children ages
    three to five to effectively transition from Part C, Infants and
    Toddlers program, to Part B. State Grant program, is imperative. An
    increase in this appropriation is necessary to keep up with the
    increased demand and help states meet their obligation.

    Personnel preparation to improve services and results for children with
                  disabilities (part d, subpart 2; section 673)

                                  [In millions]

    Fiscal year:
        1996 appropriation............................................$91.34
        1997 appropriation............................................ 93.33
        1998 authorization...........................................( \1\ )
    President's fiscal year 1998 request..............................  82.1
    AFB fiscal year 1998 recommendation...............................123.76

     \1\Such sums.

        We remain seriously concerned about adequately funding personnel
    preparation to address the shortage of teachers who are trained to deal
    with the unique needs of blind or visually impaired children. First,
    sufficient appropriation to this section is necessary to guarantee an
    adequate number of qualified personnel who can instruct blind and
    visually impaired students in such specialized services as orientation
    and mobility and the use of braille. These are the very skills that
    Congress recently recognized in the IDEA reauthorization are important
    to these children's education (See Section 602(22) on orientation and
    mobility and Section 614(d)(3)(B)(iii) on braille). Second, Congress
    recognized in the recent reauthorization the importance of the federal
    role in low incidence personnel preparation (Section 671(a)(4)(C)) and
    Section 673(b)). Sufficient appropriation to support that role is
    imperative. We are concerned that the restructuring of the personnel
    preparation section and the addition of the new State Improvement
    Grants to address some of the personnel preparation needs in the states
    (and necessary appropriation for that section), may cause a diminution
    in the appropriation for the personnel preparation programs that remain
    under federal control.

        Technology development, demonstration, and utilization and media
                  services (section d, subpart 2; section 687)

                                  [In millions]

    Fiscal year:
        1996 appropriation.........................................\1\ $29.1
        1997 appropriation............................................  30.0
        1998 authorization...........................................( \2\ )
    President's fiscal year 1998 request..............................  30.0
    AFB fiscal year 1998 recommendation...............................  41.6

    \1\ Total of the former technology and media and captioning lines.
    \2\ Such sums.
    ---------------------------------------------------------------------------
    Technology
        Access to adaptive technology, such as talking computer terminals,
    has a significant impact on the appropriate education for children who
    are blind or visually impaired. In addition, incentives for development
    and availability of new technologies as funded under this part are of
    crucial importance to students with low incidence disabilities,
    including those who are blind or visually impaired, because of the
    small size of potential markets.
    Video Description
        The reauthorization of IDEA includes language limiting, beginning
    in 2001, the video description or captioning that can be funded under
    this section. Video description provides blind or visually impaired
    persons with narration of visual elements of television, cinema and
    performing arts. Part of the rationale for the limiting language is
    that the transition to private funding of captioning should be well
    underway by that time due to the publication of the Federal
    Communications Commission's regulations on captioning in August 1997.
    (See Senate Report 105-17, page 39 or House Report 105-95, page 119).
    However, the FCC has not regulated on video description and hence there
    will be no requirement for video described programming on broadcast
    television as there will be with captioning. Additionally, video
    description is a newer technology which is not as advanced as
    captioning in its movement toward the development of private funding
    sources. This recommendation includes $3.0 million for video
    description services, a $1.5 million increase over the fiscal year 1997
    appropriation in order to assure that people who are blind or visually
    impaired are not left behind as new technology is developed.
    Additionally, it allows video description to expand its markets in
    anticipation of the 2001 deadline.

             Services for deaf-blind students (section 661(i)(1)(A)

                                  [In millions]

    Fiscal year:
        1996 appropriation............................................$12.83
        1997 appropriation............................................ 12.83
        1998 authorization...........................................( \1\ )
    President's fiscal year 1998 request..............................    NA
    AFB fiscal year 1998 recommendation.............................\2\ 29.2

    \1\ Such sums.
    \2\ Although this is no longer a line item, AFB believes that programs
    serving deaf-blind students should total $29.2 million.

        The discretionary programs reorganized by the IDEA Amendments of
    1997 no longer provide a separate programmatic line for deaf-blind
    services. However, Congress recognized the importance of the federal
    role in providing services to this population by including services to
    deaf-blind students in several sections of Part D (technical
    assistance, regional resource centers, etc.) and by creating a floor of
    the current 1997 appropriation of $12.83 million below which total
    funding for these students would not fall (Section 661(i)(1)(A)).
        However, a $12.83 million floor does not take into account the
    current needs of this population. The currently identified population
    of 11,000 children is at an all-time high, up from 2,500 children when
    the program was first authorized. Despite such a significant growth in
    population, the appropriation has not increased. We believe that
    direction from the Committee to recognize the need for increased
    funding to this population is imperative to assure that the floor
    created by the new law does not become a ceiling beyond which
    additional funding will not be provided. As stated in our previous
    appropriations statement, we believe that programs serving this
    population should total $29.2 million in order to address the needs of
    these students.
                                     ______

      Prepared Statement of the American Foundation for the Blind, May 1,
                                      1997
    Introduction
        The mission of the American Foundation for the Blind is to enable
    persons who are blind or visually impaired to achieve equality of
    access and opportunity to all aspects of society. AFB accomplishes this
    mission, in part, by taking a national leadership role in the
    development and implementation of public policy and legislation.
        We appreciate the opportunity to submit our appropriations
    recommendations for fiscal year 1998 to the Subcommittee on Labor,
    Health and Human Services, Education and Related Agencies. This
    document is presented in tabular summary form to facilitate its
    readability. Additional information to substantiate the rational for
    each funding recommendation will be furnished to the Subcommittee upon
    request. Please note that the recommendations (in millions of dollars)
    contained herein do not reflect adjustments for inflation. Therefore,
    if our recommended amount for each program or activity cannot be
    appropriated, we urge the Subcommittee to increase the appropriation by
    at least a factor for inflation.

    Individuals With Disabilities Education Act--Special education personnel
                              development (part D)

    Fiscal year:
        1996 appropriation............................................$91.34
        1997 appropriation............................................ 93.33
        1998 authorization...........................................( \1\ )
    President's fiscal year 1998 request..............................    NA
    AFB fiscal year 1998 recommendation...............................123.76

    \1\ Pending

        We are seriously concerned about the shortage of teachers who are
    trained to deal with the unique needs of blind and visually-impaired
    children. Congress needs to fund these programs at the recommended
    level to ensure an adequate supply of qualified personnel who can
    instruct blind children in such skills as orientation and mobility and
    the use of braille. Also, this recommendation includes an appropriation
    to the full authorization level for grants to Historically Black
    Colleges and Universities which would significantly assist in achieving
    critically needed improvement in training persons to serve those needs
    in their communities.

       Technology, educational media, and materials for individuals with
                              disabilities (part G)

    Fiscal year:
        1996 appropriation..................................................
        1997 appropriation..................................................
        1998 authorization...........................................( \1\ )
    President's fiscal year 1998 request..............................    NA
    AFB fiscal year 1998 recommendation............................... $15.0

    \1\ Pending

        Access to adaptive technology, such as talking computer terminals,
    has a significant impact on appropriate education for children who are
    blind or visually impaired. Accordingly, Congress should fund Part G as
    recommended to assist in the development and availability of new
    technologies.

             Centers and services for deaf-blind children (sec. 622)

    Fiscal year:
        1996 appropriation............................................$12.83
        1997 appropriation............................................ 12.83
        1998 authorization...........................................( \1\ )
    President's fiscal year 1998 request..............................    NA
    AFB fiscal year 1998 recommendation...............................  29.2

    \1\ Pending.

        This recommendation would allow a needed increase for the Office of
    Special Education Programs to fund authorized projects. The currently
    identified population of 11,000 children is at an all-time high. Of
    these children, 5,000 are being educated in the local school districts
    which means that coordinators must provide technical assistance in very
    wide geographic areas. This has resulted in an increasing number of
    special educators and general educators who need basic training in
    instruction of the children who are deaf-blind.

                      Media and captioned films (sec. 653)

    Fiscal year:
        1996 appropriation............................................$19.13
        1997 appropriation............................................ 20.03
        1998 authorization...........................................( \1\ )
    President's fiscal year 1998 request..............................    NA
    AFB fiscal year 1998 recommendation...............................  26.6

    \1\ Pending.

        We are particularly interested in two programs authorized by
    Section 653. This recommendation includes $3.0 million for video
    description services which is a $1.5 million increase over the fiscal
    year 1997 appropriation. Video description provides blind persons with
    narration of visual elements of television, cinema, and performing
    arts. The number of venues for video description has grown from 32
    public television channels to 142 today; to open description on cable
    channels to featured classic films on a major cable channel. This
    recommended appropriation level will provide assurance that blind
    people are not left behind as new technology allows for the deployment
    of digital television and expansion of the multi-media environment in
    the classroom.
        Also in this account, we recommend inclusion of a $1.0 million
    increase over fiscal year 1997 funding for Recording for the Blind and
    Dyslexic (RFB&D). RFB&D is the only national source of recorded
    educational textbooks for blind or visually impaired students at all
    levels. Increased funding will allow for the expansion of digital audio
    tapes, a new technology which significantly enhances the utility of
    text book tapes.

      Rehabilitation services independent living services for older blind
                        individuals--title VII, chapter 2

    Fiscal year:
        1996 appropriation............................................ $8.95
        1997 appropriation............................................  9.95
        1998 authorization...........................................( \1\ )
    Department of Education fiscal year 1998 request..................  9.95
    AFB fiscal year 1998 recommendation...............................  52.0

    \1\ Such sums.

        The recommended appropriation level will move this program into a
    fully funded formula grant program. Between 1960 and 1990, the number
    of severely visually impaired persons age 65 and older, living in the
    community doubled to three million; the number living in nursing homes
    doubled to 500,000. (National Center for Health Statistics) The current
    appropriation allows only a very modest program in each state which
    works to keep these individuals independent. The recommended
    appropriation level would, for example, (based on an informal
    calculation of a formula grant) provide Illinois with a grant of nearly
    $2,270,000 and Wisconsin with $1,013,226. With the public cost of
    nursing home placements now averaging $30,000 per year, it is clear
    that more appropriate and less expensive alternatives to
    institutionalized care must be found.

           Rehabilitation services rehabilitation training (sec. 302)

    Fiscal year:
        1996 appropriation............................................$39.63
        1997 appropriation............................................ 39.63
        1998 authorization...........................................( \1\ )
    Department of Education fiscal year 1998 request.................. 39.63
    AFB fiscal year 1998 recommendation...............................  50.0

    \1\ Such sums.

        Long-term grants under the Rehabilitation Act provide the only
    source of funding for college-based programs to train orientation and
    mobility instructors and rehabilitation teachers for the blind. As a
    result of the 1992 amendments to the Rehabilitation Act, the
    eligibility rate for client services has increased, creating the need
    for professional services in an area with already well-documented
    shortages.

     Rehabilitation services braille training projects (section 803, part B)

    Fiscal year:
        1996 appropriation............................................$0.573
        1997 appropriation............................................  .248
        1998 authorization...........................................( \1\ )
    Department of Education fiscal year 1998 request..................\2\ NA
    AFB fiscal year 1998 recommendation...............................   1.0

    \1\ Such sums.
    \2\ Funding has been provided under Title III Special Demonstrations
    Programs. Variation in funding is based on the number of projects in a
    multi-year funding cycle.

        Since fiscal year 1993, approximately $2.2 million has been
    allocated to the effort to increase Braille literacy. These projects
    provide Braille literacy training to rehabilitation professionals,
    parents of blind children, and family members of blind individuals in
    the form of instructional materials such as computer tutorials and the
    creation of a national network of experts in teaching Braille.
    Increased funding will allow for the development of future projects for
    the training of multiply-impaired blind persons, training for those
    blind persons for whom English is a second language, and more
    development work in the area of teaching mathematics.

                          Helen Keller National Center

    Fiscal year:
        1996 appropriation............................................ $7.14
        1997 appropriation............................................  7.34
        1998 authorization...........................................( \1\ )
    Department of Education fiscal year 1998 request..................  7.53
    AFB fiscal year 1998 recommendation...............................  8.57

    \1\ Such sums.

        Three important factors have emerged to create the need to increase
    the appropriation for the Helen Keller National Center (HKNC). HKNC,
    the American Association of the Deaf-Blind, the Rehabilitation Services
    Administration, and the Council of State Administrator's of Vocational
    Rehabilitation have developed a cooperative agreement for providing
    state plans for deaf-blind services. However, effective implementation
    of this plan is based on development of a national registry which
    current funding levels will not support. Second, there is a great need
    to expand training in and development of new technology in computer
    hardware and software for employment training. Third, the HKNC
    endowment authorized by the 1992 amendments has not been initiated
    because federal funds required to trigger its establishment have not
    yet been appropriated.

                      American Printing House for the Blind

    Fiscal year:
        1996 appropriation............................................ $6.68
        1997 appropriation............................................  6.68
        1998 authorization..................................................
    Department of Education fiscal year 1998 request..................  6.68
    AFB fiscal year 1998 recommendation...............................  8.19

        We recommend an increase of at least $1.51 million for the American
    Printing House for the Blind (APH). The number of students served
    continues to grow even though the appropriation has remained fairly
    constant. Even the recommended appropriation level would only bring the
    per capita allotment to $122.09 per student with an estimated number of
    registered students of 57,008. That is the same per capita allotment
    which was available in 1983 when the estimated number of eligible
    students was 38,249. This failure to keep pace with the number of
    eligible students results in the development of fewer specialized
    educational materials provided to blind students. This limits their
    ability to benefit from educational programs on an equal basis with
    their sighted peers.
                                     ______

        Prepared Statement of David Gipp, President, and Russell Mason,
                   Chairman, United Tribes Technical College
    re: united tribes technical college use of vocational education funding
                    in moving families from welfare to work
        United Tribes Technical College (UTTC) submits this statement on
    fiscal year 1998 Department of Education funding for tribally
    controlled postsecondary vocational education institutions as
    authorized under Title III, Part H of the Carl Perkins Vocational and
    Applied Technology Education Act.
        All levels of governments in this country--tribal, federal, state,
    local--are searching for ways to move people from welfare to work. We
    want you to know that not only does UTTC have an excellent track record
    in this regard, but our college educates and trains persons from Indian
    reservations which suffer the highest chronic employment in the nation.
    Appropriations request
        Our fiscal year 1998 requests are:
      --$4 million for Tribally Controlled Postsecondary Vocational
            Institutions, a $1.1 million increase over the Administration's
            fiscal year 1998 request and the fiscal year 1997 enacted
            level. Funding for this program is authorized under Title III,
            Part H of the Carl Perkins Act, and it supports UTTC and one
            other tribally controlled postsecondary vocational institution,
            the Crownpoint Institute of Technology. The Administration's
            request for $2.9 million would maintain the same level of
            funding appropriated for each of the past several years; and
      --We ask that the Committee Report acknowledge the important role of
            tribally controlled postsecondary vocational institutions in
            moving Indian people into economic self-sufficiency.
    Who is United Tribes Technical College?
        Established in 1969, the UTTC is a unique, inter-tribal vocational
    technical education institution located on a 105-acre campus in
    Bismarck, North Dakota. UTTC is owned and operated by five Tribes
    situated wholly or in part in North Dakota: the Spirit Lake Dakota
    Tribe, the Sisseton-Wahpeton Sioux Tribe, the Standing Rock Sioux
    Tribe, the Three Affiliated Tribes of the Fort Berthold Reservation,
    and the Turtle Mountain Band of Chippewa. Control of the institution is
    vested in a ten-member board of directors comprised of elected Tribal
    chairpersons and Tribal council members.
        UTTC is a ``full service'' postsecondary vocational education
    institution--we provide vocational education services for adults, run a
    nursery, pre-school and elementary school for the children of our adult
    students, and operate a dormitory system and a health clinic. We
    believe that this community setting has a great deal to do with the
    success of our students--students who, by and large, come from
    impoverished homes and communities.
    Moving Indian students and their families from welfare to work
        Most of UTTC's students receive some form of public assistance.
    Yet, when our students graduate, we place over 80 percent of them in
    jobs--a job placement record sustained over the past 10 years. This is
    well above the job placement rates required in the welfare reform
    statute. Our calculations show that a UTTC graduate pays back in taxes
    over a 6.4 year period the costs of receiving an education at our
    institution.
        Our 300+ students come from all over Indian country--some years we
    have students representing 45 tribes. Combined with family members and
    our pre-school and elementary students, the UTTC campus population
    exceeds 500. The majority of the students have never spent more than
    one continuous year away from their home reservations. They have also
    experienced chronic unemployment due to extremely depressed local
    economies and to education limitations which are well below the
    national average.
        A large proportion of our students are from the 14 tribes in North
    Dakota and South Dakota, where the jobless rates are enormously high.
    BIA Labor Force data reports that the percentage of the potential
    Indian labor force on and near reservations in the Aberdeen Area (South
    Dakota, North Dakota, Nebraska) which is not employed is 75 percent--
    the BIA's offical unemployment rate for this area is 47 percent. Of
    Indian people living on and near reservations in the Aberdeen area who
    are employed, only 16 percent earn over $9,000.\1\
    ---------------------------------------------------------------------------
        \1\ Indian Service Population and Labor Force Estimates, U.S.
    Department of the Interior, Bureau of Indian Affairs, 1995.
    ---------------------------------------------------------------------------
        Thus, UTTC is committed not only to its post-secondary mission, but
    to the economic, social, and cultural advancement of Indian people. Our
    mission is to provide an environment where students and staff can
    preserve and transmit knowledge, values, and wisdom to ensure the
    survival of native people and Indian Nations along with the vocational
    training of native students. There is no other post-secondary
    vocational education institution that in a residential setting is
    Tribally-controlled, culturally-based, family-oriented, and focused on
    both Tribal economic needs and mainstream employment training.
        The enactment last August of welfare reform legislation makes the
    work of UTTC even more critical. We want to be a full partner in moving
    Indian families into jobs with living wages, but as it stands now, we
    have to turn away students due to lack of institutional resources. We
    do no recruiting at UTTC, yet we have a current waiting list of over
    200 students who want to attend our institution. Some persons wait for
    2 to 4 years to be admitted, and some potential students do not even
    apply, knowing of the waiting list.
    UTTC Accredited Program Offerings and Other Services.
        We offer ten accredited certificate programs and ten accredited
    Associate of Applied Science degree programs.\2\ We are in the process
    of integrating entrepreneurship and high technology offerings into
    appropriate curricula. All programs are accredited through the North
    Central Association of Colleges and Schools at the certificate and two-
    year degree granting levels.
    ---------------------------------------------------------------------------
        \2\ The following Certificate Programs are offered: Administrative
    Office Support, Automotive Service Technician, Construction Trades
    Technology with options in Carpentry, Electrical, Plumbing, and
    Welding; Early Childhood Education; Criminal Justice; Hospitality
    Management; Food & Beverage Specialization; Medical Secretary.
    ---------------------------------------------------------------------------
        Because of its unique residential setting, we provide those
    institutional services that are fundamental to the delivery of quality
    vocational education programming. These services include:
      --Adult education for students needing advanced basic education
            skills or who desire to pursue vocational programs requiring
            GEDs or high school diplomas;
      --Academic instruction which allows our graduates who wish to pursue
            additional college education a sufficient background;
      --Instructional supplies and equipment for all vocations;
      --Student services including housing, a cafeteria, local student
            transportation, library, financial aid office, counseling and
            placement services, facilities maintenance, and overall
            administrative and fixed costs for UTTC's 105-acre campus base;
      --Early childhood (nursery and pre-school) services for approximately
            100 children, ages 8 weeks to five years. Nearly half of these
            children are under age two, and so the staff to child ratio of
            necessity is very high in order to provide proper supervision
            and to meet the North Dakota licensing requirements;
      --The Theodore Jamerson Elementary School (K-8th grades) serving 133
            American Indian students;
      --Modest offerings of cultural, athletic, and recreational activities
            to supplement student learning experiences and campus-based
            family services.
    Funding History/Funding Shortfalls.
        Following are some of the financial difficulties UTTC has faced in
    recent years:
        Decreased buying power.--Funding for UTTC has remained flat since
    fiscal year 1990. With flat funding and increased costs, we've
    experienced a 20 percent decrease in our operating and purchasing
    strength since 1990. Our indirect cost budget which provides much of
    the infrastructure funding (e.g. administrative and support services)
    is now approximately 81 percent of what it was in 1989.
        Increased utility costs.--We have experienced a large increase in
    the cost of utilities, with electricity expenses rising about 20
    percent per unit and the per unit gas cost increasing approximately 113
    percent since 1990. Over the years the College has been able to
    partially offset utility rate increases by implementing stringent
    conservation measures such as improved weatherization and reductions in
    building temperatures. However, energy consumption cannot be further
    reduced because of the college's location and the harsh winters in the
    northern plains.
        Lowest Staff Salaries in the Nation.--North Dakota salaries for
    higher education faculty rank 50th--the lowest in the nation--but the
    average faculty salaries at UTTC are lower even than those in the North
    Dakota state system.\3\ The average faculty salary at UTTC is $24,476,
    while the average faculty salary at the community colleges in North
    Dakota range from $29,900 to $32,800. This translates to our faculty
    receiving an average salary which ranges from $5,500 to $8,400 less
    than their peers at neighboring community colleges. Salaries for non-
    faculty staff would show a disparity at least as wide as that for
    faculty. Unlike institutions which are able to provide salary increases
    to employees based on the length of service (unrelated to cost of
    living increases), UTTC does not have the financial ability to provide
    a sound system of incremental merit salary increases based on length of
    employment.
    ---------------------------------------------------------------------------
        \3\ Source: Integrated Postsecondary Education Data Systems (IPEDS)
    Report of the U.S. Bureau of the Census and the Department of Education
    Office of Education Statistics.
    ---------------------------------------------------------------------------
        We are at a critical juncture, and face an eminent risk of losing
    qualified, capable staff and faculty due to low salaries. The
    dedication of our staff cannot sustain them indefinitely.
        Deferred facility maintenance and repair.--Lack of available
    resources has also meant limitations on the repair and maintenance of
    physical facilities. The College occupies the old Fort Lincoln Army
    Post. Other than the more recently constructed skills center and part
    of the community center, UTTC's core facilities are 80 to 90 years old.
    Estimates for new facilities total over $12 million, according to a
    1993 U.S. Department of Education report to Congress. Continuing a
    course of nonrepair will ultimately prove more costly as the repairs
    will be greater. This is especially true of the water and sewer systems
    on campus. Fire and safety reports document these needs. Neither UTTC
    nor other tribal colleges receive any facilities funding through the
    Department of Interior. Additionally, our 3.4 miles of campus roads are
    in a state of disrepair and require $1.4 million in repairs or
    replacement. Our last major repairs were in 1988.
    Conclusion
        United Tribes Technical College is doing what Congress intended
    when enacting the welfare reform law last year--enabling people to be
    self-sufficient and in many cases helping them to get off and stay off
    public assistance. UTTC students receive a quality education in a
    native, family-based environment and in a cultural context familiar to
    and appropriate for them. We believe it is the primary reason for our
    success in educating and finding employment for UTTC students. We need
    your assistance to ensure that the unique educational opportunities
    offered by United Tribes Technical College will be available for what
    we hope will be an increasing number of Indian and Alaska Native
    students and their families next year and in the future. Thank you.
                                     ______

     Prepared Statement of the National Indian Impacted Schools Association
        The National Indian Impacted Schools Association--NIISA--is an
    association of public schools in Indian country dedicated to quality
    education and assuring that the United States' obligation to provide
    resources for educating Indian and Alaska Native students is fulfilled.
    Our membership consists of public school districts which receive
    federal Impact Aid funds because of the presence of students from
    Indian trust lands and Alaska Native lands. Approximately 90 percent of
    Indian and Alaska Native students nationwide attend public schools.
    Summary of Request
        We ask the Subcommittee to support the following with regard to the
    fiscal year 1998 Department of Education budget:
      --$667 million for Impact Aid Basic Support payments. This is the
            same as the request of the National Association of Federally
            Impacted Schools (NAFIS), and is $51.5 million over the fiscal
            year 1997 enacted level for Basic Support payments;
      --$25 million under the authority of the Impact Aid statute for
            payments for Construction. This compares to the fiscal year
            1997 enacted level of $5 million and the President's request of
            $4 million; and
      --$425 million for million for the Technology Literacy Challenge Fund
            as requested by the Administration to help schools integrate
            technology into school curricula. This is $225 million over the
            fiscal year 1997 enacted level.
    Importance of the Impact Aid Program to Indian Country
        For Indian country, the Impact Aid program is a vital element of
    the public policy of providing every child a free public education.
    Signed into law in 1950, the Impact Aid program is one of the oldest
    federal education programs. Simply put, it provides federal funds for
    public school operations that would have otherwise been provided by
    local tax revenues but for the presence of federal property--in our
    case, lands held in trust by the federal government for Indian tribes.
    The Impact Aid program is an example of the U.S. government carrying
    out its trust responsibility--in this case, for education--for Indian
    and Alaska Native peoples. Some facts about the importance of the
    Impact Aid Program to Indian Country:
      --There are over 600 school districts throughout the country which
            receive Impact Aid funds for Indian lands schools.
      --Funds for Indian lands students represent nearly 50 percent of the
            federal Impact Aid appropriation.
      --The Indian Country land base that generates Impact Aid funds
            consist of 53 million acres of Indian trust land in the lower
            48 states and 44 million acres included in the Alaska Native
            Claims Settlement Act.
        Additionally, the Impact Aid law provides a formal link between
    tribal governments and the public schools, providing for school
    district consultation with Indian tribes and tribal communities. This
    is especially important because public schools are State institutions,
    but located on tribal lands. School districts must consult with tribes
    and the Indian community to develop Indian Policies and Procedures
    (IPP). Tribes and parents of Indian students are able to comment on
    whether Indian students are equal participants in educational programs
    and school activities, and to request modifications in school programs
    and materials. Tribes also have administrative appeal rights under the
    Impact Aid statute.
    Indian Lands School Facility Initiative
        NIISA is placing a high priority on the need for school facilities
    construction and renovation, including making facilities ready for
    education technology. We are working with Congress on the pending
    school construction initiatives in an effort to make them responsive to
    the needs of our schools--Indian lands schools. We realize, however,
    that new school construction legislation will probably not be enacted
    into law this year, and so we are asking for construction funding under
    the current authority of the Impact Aid statute. We have asked for $25
    million, but in reality we could ask for many times that amount with a
    straight face because the need justifies it.
        Facility construction and renovation is a crucial issue for school
    districts in Indian country. It is common knowledge that school
    facilities in Indian country and elsewhere are overcrowded and
    crumbling, and that many students are educated in trailers and other
    temporary buildings. The condition of public school facilities
    nationally has been documented in recent General Accounting Office
    (GAO) surveys. But these GAO reports are based on only random surveys
    and do not provide Indian-lands specific information.
        In October of 1996, NIISA sent a six-page questionnaire concerning
    school facility needs to every school district which receives Indian
    lands Impact Aid funding. The NIISA survey included a number of
    questions from the recent GAO surveys of public schools in order to
    compare results with the GAO findings. Officials in the US Department
    of Education Impact Aid Programs office were also consulted during the
    process of drafting the survey. The questionnaire went further than
    bricks and mortar. It also asked questions regarding the ability of the
    school district to raise revenue for facility construction--something
    not done by the GAO surveys. Finally, the survey contained a series of
    questions regarding each school district's readiness for computers, the
    internet and other education technology.
        While we have not yet fully analyzed our survey results, the
    following findings are important indicators of the facility needs of
    public schools in Indian Country:
      --65 percent of buildings are over 20 years old, including 38.2
            percent over 30 years old;
      --$6,872,000 is the average estimated costs necessary for repairs,
            renovations, modernization and construction to put schools in
            overall good condition;
      --the average cost per student to make school buildings meet health
            and safety stands is $1,947;
      --to accommodate expected increased enrollment over the next 5 years,
            the schools responding to the survey will need 13.1 percent
            more space. Within 10 years, the space needs are expected to
            increase by 27.9 percent;
      --71 percent of school districts have had no school construction bond
            issued since 1985, and 23 percent of school districts have
            never had a bond issued;
      --Of schools with 70 percent LOT MOD and higher, the need for
            construction, renovation, and repair funding is two thirds
            higher per pupil than in the other respondents to the NIISA
            survey. (Note: LOT MOD is a Department of Education measure of
            need of school districts affected by the presence of federal
            property.);
      --42 percent of respondents have unhoused students;
      --59 percent of school buildings have inadequate laboratory science
            space;
      --63 percent of schools are not well served for before/after school
            care.
        While NIISA appreciates the Administration's recognition of the
    need for school construction funding as reflected in President
    Clinton's school construction initiative, we intend to continue working
    with Republican and Democratic Members of the House and Senate to
    modify the proposed program to make it beneficial to Indian Country.
        The President's school construction initiative would pay up to half
    of the interest on school construction bonds or similar financing
    mechanisms, with a target of stimulating at least $20 billion in new
    construction or renovation projects. Without important modifications,
    however, the initiative would be of little, if any, benefit in Indian
    country where the ability to issue school construction bonds is very
    limited or not possible at all--this is particularly true in those
    school districts where a significant amount of the land base is Indian
    trust land. Any proposal which is dependent upon the ability of school
    districts to issue bonds will not help schools heavily impacted by the
    presence of Indian lands.
    Support for Education Technology
        NIISA supports the President's request for $425 million for
    Technology Literacy Challenge Fund to help schools integrate technology
    into the curriculum.
        Although there is considerable public discussion about linking
    schools to the internet, NIISA's survey results show that many, many
    schools lack the electrical, telephone and other infrastructure
    necessary to utilize modern educational technology. The NIISA survey
    responses show:
      --75 percent of school buildings need funding for infrastructure to
            support education technology--this compares to the 60 percent
            figure in the GAO surveys. Particularly high on the needs list
            is fiber optic cable;
      --56 percent of school buildings have significant needs for computers
            for instructional use;
      --61 percent of school buildings have significant needs for modems;
      --81 percent of school buildings need telephone lines for instruction
            areas
      --79 percent of school buildings need fiber optic cable.
      --62 percent of school buildings need for electrical wiring for
            computers.
        It is no wonder we support increased funding for education
    technology in schools.
        Thank you for your interest in the need our public schools which
    educate children from Indian country. We ask you to always keep in mind
    the trust responsibility for the education of Indian and Alaska Native
    children and the federal responsibility regarding school districts
    which contain Indian and federal property.
                                     ______

             Prepared Statement of the American Library Association
        The American Library Association appreciates the opportunity to
    provide this statement for review and inclusion in the hearing record
    for fiscal year 1998 Appropriations. The 58,000 members of ALA,
    including public, school, state, academic and special librarians,
    library supporters, trustees, and friends of libraries, thank the
    Labor, Health and Human Services and Education and Related Agencies
    Subcommittee for your support in the past and request funding at the
    authorization level of $150 million for this first year of the Library
    Services and Technology Act.
        In addition, we ask that you fund the Improving America's Schools
    Act Title VI block grant at least at the fiscal year 1997 level of $310
    million. This Title is the only funding possibility for school
    libraries and the Department of Education estimated last year that at
    least 40 percent of the funding goes for school library materials and
    resources.
    Library Services and Technology Act
        The Library Services and Technology Act was passed and signed into
    law on September 30, 1996. The purpose of the new legislation is to
    consolidate Federal library programs while stimulating excellence and
    promoting access to learning and information resources in all types of
    libraries for individuals of all ages.
        The provisions of the Library Services and Technology Act promote
    library services that provide all users access to information through
    State, regional, national and international electronic networks and
    provide electronic linkages among and between libraries. The law
    promotes targeted library services to people of diverse geographic,
    cultural and socioeconomic backgrounds, to individuals with
    disabilities and to people with limited functional literacy or
    information skills.
        Most funds are allocated through state library agencies, which
    administer programs and develop cooperative plans for use of the funds.
    Four percent of the funds are to be used for national leadership
    purposes and 1\1/2\ percent for tribal library services.
        The Library Services and Technology Act builds on the strengths of
    previous federal library programs but has some major advantages and
    differences. It retains the state-based approach, but sharpens the
    focus to two key priorities: information access through technology, and
    information empowerment through special services.
        New technology and a multitude of community needs will shape the
    way we seek and obtain information. The Library Services and Technology
    Act encourages interlibrary cooperation, emphasizes libraries as change
    agents and implementers of equity, extends libraries' reach as self-
    help institutions and community partners in lifelong learning and
    literacy, economic development, jobs information, health information,
    etc.
        Public libraries of today are vastly different from the libraries
    of thirty years ago and the libraries of the next millennium will be
    different as well. The new LSTA gives states the flexibility to
    determine state needs and shape library programs to address those
    needs.
        The following examples illustrate the kinds of innovative projects
    libraries are conducting with the use of federal funds to connect
    people to information that can help to change lives, advance education
    and contribute towards the productivity of the nation:
        Health Information.--The Aurora, Illinois public libraries serve a
    population of 107,000 people, of which 12,535 are teens ages 12-18.
    This area has experienced a significant increase in youth violence,
    gang involvement, teen pregnancy, suicide and a variety of health
    problems. A partnership has been formed among the Aurora Public
    Library, Messenger Public Library of North Aurora, Sugar Grove Public
    Library and the East and West Aurora School districts, as well as the
    Mercy Center for Health Care Services, Aurora University, the DuPage
    Library System, Cities in Schools, Community Contacts, the Kane County
    Information and the Kane County Health Department to provide materials,
    information and programming on issues related to teen health. The
    primary focus was on materials for teens themselves though some
    materials and programs were geared to parents and those who work with
    teens. Teens were surveyed to determine their information needs. New
    relationships were developed among concerned librarians, teens,
    parents, educators and health care professionals. The health
    collections of all libraries were strengthened by the project. Based on
    a high level of participation and its initial success, the project will
    be continued.
        Literacy.--At the Alameda County, California, library a bookmobile
    visits four schools in the San Lorenzo School District. Students speak
    22 languages other than English and reading scores are low. The Learn A
    Lot program offers free tutoring and library services. Volunteers can
    be high schoolers to senior citizens who receive 16 hours of training
    plus observation time of the small group being tutored. Librarians
    present book talks and children may find the books on the bookmobile
    and take them home.
        Technology.--At Baltimore, Maryland's Enoch Pratt library, federal
    funds were used to begin a partnership with library staff, volunteer
    partners and mentors and young adults at risk to introduce the young
    people to information through technology. Working with their mentors,
    students learned to use the Internet and access SAILOR, the Maryland
    State library network, to find information and become adept at using
    technology. Studies have shown that 60 percent of the jobs created by
    the year 2000 will require computer skills. The at risk youth in the
    innovative library program will have a head start.
        The federal role in support of libraries helps to ensure that the
    existing information infrastructure of libraries is technologically
    equipped to perform governmental functions cost effectively, such as
    supporting literacy and lifelong learning, organizing and providing
    access to federal, state, and local government information and other
    community information, undergirding economic development by providing
    jobs information and supporting small businesses and providing access
    to consumer health information.
        Past library funding was administered by the Department of
    Education library programs through the Library Services and
    Construction Act. With the new law, the Library Services and Technology
    Act, administration of the program moves to the Institute of Museum and
    Library Services (IMLS). Funding is passed through the Department of
    Education to IMLS, at an authorization level of $150 million. Most
    funding goes to libraries through states; 4 percent is reserved for
    national leadership purposes. The Federal investment in the former
    Library Services and Construction Act and the new Library Services and
    Technology Act has acted and will act as a stimulant to local
    investment because of the funding match requirement.
        The Administration's budget would provide level funding for library
    programs. In this first year of funding of the new Library Services and
    Technology Act, it is particularly important for Congress to fund
    library programs at the $150 million authorization level.
        A strong investment will connect more libraries to the Internet and
    support literacy and education, help libraries provide job and consumer
    health information, serve small business and provide information for
    lifelong learning.
    IASA Title VI
        The reauthorization of the Elementary and Secondary Education Act
    (the Improving America's Schools Act), included renewal of the Title VI
    (formerly Chapter 2) block grant. This block grant allows funding of
    school library resources and materials among its uses of funding. The
    rapid changes that have occurred in the former Soviet Union and united
    Germany illustrate how quickly a school's library can be filled with
    out-of-date material. Expensive atlases, geographies and other
    reference books were immediately obsolete. Our children deserve not
    only technological resources but the resources for in-depth research as
    well. We ask the Subcommittee to fund IASA Title VI at least at the
    fiscal year 1997 level of $310 million. The Administration's budget did
    not request funding for this Title.
    Other Initiatives
        The Administration's fiscal year 1998 budget proposed increased
    funding for IASA Title III Educational Technology. Secretary of
    Education Richard Riley in his testimony before the Subcommittee stated
    that the money was to be used to link rural and inner-city schools to
    the Internet and would help reach the goal of connecting all schools to
    the Information Superhighway by the year 2000. We ask the Subcommittee
    to fund Title III at the requested level. We also ask that you fund
    other programs under your jurisdiction that improve reading skills,
    literacy and lifelong learning and technological literacy and
    educational research and statistics. We also urge support of the budget
    request of the U.S. National Commission on Libraries and Information
    Science.
        We thank the Subcommittee for the consideration you have shown for
    libraries in the past, and particularly for your part in accomplishing
    the reauthorization of the Library Services and Technology Act in the
    Fall of 1996.
                                     ______

       Prepared Statement of the International Society for Technology in
               Education and the Consortium for School Networking
        The International Society for Technology in Education (ISTE) and
    the Consortium for School Networking (CoSN) are pleased to submit the
    following testimony to the House Appropriations Committee, Subcommittee
    on Labor, Health and Human Services, and Education.
        ISTE is a nonprofit international membership organization devoted
    to promoting appropriate uses of technology to support and improve
    learning, teaching, and administration. As part of its mission, ISTE's
    goal is to provide individuals and organizations with high-quality and
    timely information, materials, and services that support technology in
    education. ISTE also develops products for students, classroom
    teachers, lab teachers, technology coordinators, and teacher educators,
    as well as for parents, administrators, policy makers, and visionaries.
        CoSN is a nonprofit organization dedicated to promoting and
    encouraging the use of telecommunications by advocating access to the
    emerging national information infrastructure in K-12 classrooms. Its
    members represent educators, school districts, nonprofits and
    businesses that share an interest in advancing educational
    telecomputing. CoSN is committed to equal access, equity, and quality
    in school networking.
        Future generations can only succeed if they are prepared for the
    information and technological age. According to the National Center for
    Education Statistics, 65 percent of U.S. public schools have access to
    the Internet, but only 14-percent of public school instructional
    classrooms were connected to the Internet. Among all public schools 20
    percent of teachers used advanced telecommunications for teaching. Yet,
    by the year 2000, 6 of every 10 new jobs created will require computer
    skills. It is imperative for the federal government to support efforts
    to develop, disseminate, and evaluate educational technology through
    policy and resources.
        Last year, Congress exhibited its leadership and support for such
    efforts by approving the Technology Literacy Challenge Fund. This
    program provides $2 billion over five years to catalyze and leverage
    private and public efforts to provide K-12 students with the
    opportunity to develop technology skills. The Fund provides formula
    grants to all 50 states to help implement strategies enabling schools
    to fully integrate technology into their curricula. In the first year
    of the program, Congress appropriated $200 million. ISTE and CoSN are
    dedicated to preserving this program and request that Congress maintain
    its commitment to fully funding it over the next five years.
        Both ISTE and CoSN are working to prove the effectiveness of
    education technology programs and to develop more comprehensive
    evaluation criteria for these programs in the future. We are beginning
    to see the quality and effectiveness of many of the programs funded
    through the Technology Literacy Challenge Fund and other educational
    technology programs. These programs have helped to improve academic
    performance, as well as student prospects for post-secondary education
    and employment opportunities.
        The Technology Literacy Challenge Fund, which provides funds to
    every state, has enabled all states to either begin or continue their
    comprehensive state planning for integrating technology into teaching
    and learning. Planning, as Congress understood by requiring states to
    develop a plan as part of the Technology Literacy Challenge Fund, is
    essential for states to be able to efficiently and effectively use the
    funds appropriated by Congress. Now that the first year of planning is
    complete, states and school districts are ready to further implement
    their plans.
        ISTE and CoSN also request the continuation of, and full funding
    for, the Technology Challenge Grants, Title VII Block Grants, Goals
    2000, Star Schools, the Carl Perkins Vocational Education Act, the
    Tech-Prep Education Act, all of which can support the development,
    improvement, and effective use of educational technology if a state
    and/or local school district choose to use funds under these programs
    to complement and integrate technology toward achieving the goals of
    these programs.
        Technology is an essential part of teaching and learning. It not
    only teaches important job skills for the future, it expands the scope
    of possibilities in learning and communicating. Thus it is important
    for students to not only learn how to use the technology but that
    teachers integrate the technology into the curriculum.
        In recent years, many of the teaching techniques and classroom
    arrangements that have been shown to be effective are facilitated by
    technology. Computer tools such as word processors, databases and
    telecommunications help students to address and solve a wide range of
    problems. Indeed, computer-assisted learning and many computer-based
    adaptive environments for students with special needs have been shown
    to be highly effective.
        Computers and networking make the classroom more open. Students and
    teachers can reach out to their community. Parents and administrators
    can better know what and how students are learning. Technology
    increases interactivity, allowing schools to better address diverse
    student needs. It empowers teachers and students and facilitates a
    restructuring of schools toward more student-centered learning
    environments.
        The following are some examples of technology being used
    effectively in schools throughout the country. They are evidence that
    with a properly trained teaching staff and a supportive administration,
    students are excited about learning, show increased self-esteem have
    improved test scores, and are learning things most students do not
    learn in ways most teachers do not even contemplate.
        The Clark County School District, Las Vegas, Nevada, in cooperation
    with the Clark County Public Education Foundation, has created a
    network in which community human service providers, businesses, and the
    educational system can join in a virtual ``workspace'' to collaborate
    with one another, apply their individual expertise, and meet the
    challenges of a fast growing, large school district. The network,
    called InterAct, was created by the Foundation. It is an educational
    learning community network where community partners can work with the
    school district to build a community that merges community needs and
    interests with teachers' needs and interests. The Clark County School
    District is the 10th largest school district in the nation, with
    approximately 180,000 students encompassing an area of approximately
    8,000 square miles. The district has both rural and urban school.
    Because of the rapid growth and size of the school district, the
    implementation of technology is vital to assure the continued success
    of the school district. The Clark County Public Education Foundation is
    a non-profit organization that works with community leaders,
    businesses, industry, and human service organizations to implement
    innovative practices and creative applications of technology in the
    school district. The Foundation administers a series of grant programs
    for educators that encourages the development of innovative practices
    in schools. These innovative practices are then replicated throughout
    the school district to merge creative curriculum applications with
    current and emerging technologies.
        In Louisville, Kentucky, the Jefferson County Public Schools
    created a comprehensive district-wide approach to technology
    integration. It involves all schools, all grades, and all programs.
    Students at all levels are using the technology to learn basic skills,
    to write, complete research projects that include developing databases,
    analyzing data using spreadsheets, publishing their work using desktop
    publishing applications, preparing presentations using interactive
    multimedia, telecommunication with distant locations about topics of
    mutual interest, and using simulations to develop skills to deal with
    real-world situations.
        The Ralph Bunche Computer Mini-School, a school within a school for
    4th-6th graders, in Harlem, has extensive access to network and
    software tools to support communication and research and the smaller,
    more coherent classes. Mini-school students move back and forth between
    their regular classes and the Computer Room, where they conduct
    research and work on assignments for their classes. Each Mini-school
    student has an electronic mail account to communicate with each other
    and with distant ``pen'' pals and individuals who can help them with
    their research. For example, students studying Ireland contacted a
    university student in Dublin for a first-hand report of the kinds of
    jobs and sports interest that are prevalent in Ireland. Classes have a
    computer in the room connected to the school network. Each Mini-school
    classroom gets two 1-hour periods to use the computer lab. These
    sessions are planned with the teacher who integrates the technology
    into the ongoing curriculum.
        In Flint, Michigan, a chemistry classroom at Flint Northern High
    School links computers to a remote super computer at the National
    Education Super Computer Program. The classroom technology includes
    microcomputer-based labs, spreadsheet data manipulation, graphing
    software, and word processing to prepare reports.
        UtahLINK is an example of the wealth of information and resources a
    school has access to when connected to the Internet and teachers are
    trained in how to access that information. UtahLINK is a service of the
    Utah Education Network. It provides Utah schools with internet
    connectivity, software tools, comprehensive training, and online access
    to electronic educational materials both locally and from the Internet.
    Through UtahLINK, teachers have access to a searchable database of
    state-adopted course descriptions, standards and objectives in contact
    areas from applied technology to social studies. The database contains
    integrated curriculum units and lesson plans linked directly to core
    subject content areas as well as online projects and classroom
    collaboration listings. It also provides electronic access to full-text
    library journals and graphics.
        Continued funding for these and other important education
    technology programs will greatly expand what and how today's students
    learn and better prepared them for tomorrow. We, therefore request your
    continued support for federal education technology programs so that one
    day soon all students will share the benefits of technology in their
    classrooms and all teachers will integrate technology it into their
    curricula.
                                     ______

          Prepared Statement of the National School Boards Association
    Introduction
        The National School Boards Association (NSBA) is the nationwide
    advocacy organization for public school governance through our
    federation of 53 states and territories we represent over 95,000
    elected and appointed school board members. Local school board members
    are the representatives of parents and local communities, and are
    responsible for governing local public school districts across the
    nation. The vast majority of school board members are not paid for
    their service. Rather, they give their time because they care about the
    education of their own children and the children in their community.
    Just like the Congress, local school board members are accountable to
    and represent the communities that have elected them. School board
    members also balance the large public policy issues, the values of
    their community, and the impact of those issues on their school
    district.
    Overview
        Horace Mann was instrumental in creating America's publicly
    supported education system; he saw the practical importance for our
    citizens, as well as business and industry, to develop a civilized
    society and a more productive economy. Those twin goals are as
    important today as they were in the 1850s. Maintaining the quality of
    schools to ensure an educated and productive society where everyone has
    the opportunity to flourish is the premise behind public education.
    Part of our ability to create those high-quality schools is continuing
    the much-needed support of the federal government. In virtually every
    public poll, Americans view education as their number one priority.
    President Clinton reflected the view of the American public in his
    State of the Union address when he introduced his ten-point education
    plan primarily focusing on elementary and secondary education.
        The President's fiscal year 1998 budget touts an 11 percent
    increase in spending on elementary and secondary education programs.
    While we applaud the Administration for its effort to break education
    appropriations out of the small incremental increases that have been
    its history, the time-tested, existing programs should not receive such
    minimal gains, instead they need substantial funding increases. The
    proposed Clinton budget allots significant funds to higher education
    programs. Yet, the funds allocated for higher education will prove too
    late if our K-12 programs do not receive support to adequately prepare
    students for a postsecondary education.
    Education Investment is Critical
        The small proposed increases in the fiscal year 1998 appropriations
    bill for programs such as special education (4.3 percent increase) and
    Title 1 (4.3 percent increase) are for programs vital to school
    districts. Substantial funding for special education and Title 1 are
    necessary to keep pace with the demands for these services. After the
    dramatic cuts in the federal education programs in fiscal year 1995,
    the 15 percent increase to federal discretionary education funding in
    fiscal year 1997 was well appreciated, but barely restored those
    earlier rescissions. It is essential that the federal government's
    commitment for fiscal year 1998 to education spending remain consistent
    to that in fiscal year 1997 to address increasing enrollments
    generally, and in those programs specifically. The population of
    students with disabilities benefiting from federal funds under the
    Individuals with Disabilities Education Act (IDEA) is dramatically
    increasing--while the funding is not. According to The National Center
    for Education Statistics, between 1977 and 1994 there was a 46 percent
    increase in the number of students with disabilities. Yet, the federal
    government only contributes seven percent of the promised 40 percent of
    the ``excess cost'' funding for IDEA, leaving the local school
    districts with an overwhelming gap between need and available funds.
    The RAND study (Grissmer et all. 1994) concluded that students
    participating in Title 1 programs perform better on achievement tests
    than comparable students who do not receive the extra support. It is
    imperative that these important, specialized programs adequately
    provide for the wide range of students entering our schools in larger
    numbers.
        Dramatic increases are projected for school populations within the
    next seven years. According to the National Center for Education
    Statistics, the K-12 school population will expand by seven million
    students, a 14-percent increase, between 1993 and 2005. The local
    school district budget needs to accommodate the increased number of
    students entering our schools to ensure each student receives a high-
    quality education. Without increased federal funds, it will be
    impossible to provide an excellent education for all of our students.
        The prerequisites for a successful school that maximizes learning
    are expensive. David Berliner and Bruce Biddle reported in The
    Manufactured Crisis: Myths, Fraud and the Attack on America's Public
    Schools that increased education spending contributes to higher levels
    of school achievement by providing for a more talented teaching staff,
    smaller class sizes, and improved programs and facilities--the means
    necessary for a productive education experience. Further, Berliner and
    Biddle dispel the myth that the United States spends more on education
    than other industrialized countries in The Manufactured Crisis. In
    fact, they found that K-12 spending in the United States is actually
    less than the average industrialized nation. The United States ranks
    only ninth in comparison with 16 industrialized nations by spending 51
    percent less on per pupil expenditure than does Switzerland, the
    country spending the most. The following chart offers the complete
    breakdown.

         K-12 per pupil expenditures for education in 16 nations in 1985

                        [Based on exchange rates in 1988]

    Switzerland.......................................................$7,061
    Sweden............................................................ 5,932
    Norway............................................................ 5,002
    Japan............................................................. 4,927
    Denmark........................................................... 4,410
    Austria........................................................... 4,297
    West Germany...................................................... 4,016
    Canada............................................................ 3,683
    United States..................................................... 3,456
    Belgium........................................................... 3,254
    Netherlands....................................................... 3,224
    France............................................................ 3,094
    United Kingdom.................................................... 2,314
    Australia......................................................... 2,291
    Italy............................................................. 1,809
    Ireland........................................................... 1,380

    Source: Shortchanging Education (Rasell & Mishel, 1990).

    Statistical Sources: Statistical Yearbook (UNESCO, 1988); Digest of
    Education Statistics (National Center for Education Statistics, 1988).
    ---------------------------------------------------------------------------
    Conclusion
        A strong commitment to K-12 education programs is vital given sharp
    enrollment increases in elementary and secondary schools nationwide.
    This country must ensure that all students achieve high academic
    standards, and meet the demands for new educational technology. There
    is also the growing acknowledgment that Congress needs to pay its share
    of special education costs. Increased funding does make a difference in
    education, as it does in most areas. It contributes to higher levels of
    school achievement by providing a more talented teaching staff, smaller
    class size, and improved programs and facilities.
        Establishing education as a national priority reflects the American
    people's continued dedication to educate its children and to create
    economic stability. An investment in education will secure the future
    of our country, our people, and our children. It pays long-term
    dividends. The congressional priority on education is laudatory. NSBA
    challenges the U.S. Congress to reflect the priority by meeting the
    increase for K-12 education programs established in the President's
    proposed fiscal year 1998 budget for the proven and effective programs,
    including special education and Title 1, among others.
                                     ______

          Prepared Statement of the United States Catholic Conference
        There are 8,250 Catholic elementary and secondary schools in the
    nation with, more than 2.6 million students, 166,000 professional
    educators and millions of parents who support them. The United States
    Catholic Conference (USCC), urges you to provide $41.114 million for
    the Title I ``Capital Expenses'' provision of the Improving America's
    School Act--Public Law 103-382, the same amount approved by Congress in
    its fiscal year 1997 budget and the amount proposed in the Clinton
    Administration's fiscal year 1998 budget. These ``Capital Expense''
    funds are needed, as a matter of justice, to restore Title I services
    to large numbers of eligible students enrolled in religiously oriented
    schools who have been deprived of them since the Supreme Court's Felton
    decision in 1985. These funds are also needed to improve the quality of
    services offered to these educationally disadvantaged students.
        Although The USCC's comments will be referring to Catholic schools
    particularly, the problem we are addressing affects students in schools
    throughout the religious school community. This appropriation addresses
    a problem affecting all religious schools enrolling eligible Title I
    students.
        We wish to take this opportunity to thank Chairman Specter, the
    ranking minority member, Mr. Harkin, and each member of the Committee,
    for their efforts to restore full Title I services to all eligible
    religious school students. Since 1988, your support has secured annual
    appropriations for ``Capital Expense'' funds beginning with $19.76
    million in fiscal year 1989 to $41.114 million in fiscal year 1997.
    These funds have been very critical to the task of restoring full Title
    I services after Felton.
    Chapter 1 and Catholic Schools:
        In Title I, the federal government demonstrates its determination
    to help students overcome the disadvantages of both lower income
    environment and educational ability. The extra resources Title I
    provides are a valued supplement to the instruction Catholic schools
    provide, most especially in inner city schools. It is particularly
    egregious when students eligible for such services, who would receive
    those services if enrolled in a public school, are deprived of them
    solely because they attend Catholic or other religious schools. Parents
    should not be obliged to choose between Title I services and the
    quality of education available in Catholic schools. Depriving students
    of such essential services, simply because they attend religiously
    affiliated schools, damages the students and our nation. This
    Committee, and Congress, have repeatedly shown that they share our
    concern.
        Catholic schools are an important contributor to the educational
    opportunity available to American students. In numbers of schools, the
    Catholic school community is larger than any state system. In numbers
    of enrolled students, it is the third largest, after California and
    Texas. Almost 55 percent of all students enrolled in private and
    religious schools are currently enrolled in Catholic schools.
        Catholic schools have demonstrated a particular success with the
    students Title I attempts to serve. In a number of states, Catholic
    schools have a higher percentage of minority students than their public
    school counterparts. Nationally, 24.1 percent of Catholic school
    students are from ethnic or racial minorities, a figure comparable to
    the public schools nationally. And 13.2 percent of these students are
    not Catholic.
        Catholic schools have an enviable record for effective teaching.
    The drop-out rate in Catholic high schools is less than 4 percent; more
    than 83 percent of Catholic high school graduates go on to
    postsecondary education. Minority Catholic school students, in
    particular, have higher achievement scores than similar students in
    other schools in reading and math tests administered as part of the
    National Assessment of Academic Progress (NAEP) over the past decade.
    The reality is that Title I students in Catholic schools show that the
    program can work, even with the severe limitations that the Felton
    decision places on those students. This record of success should not be
    endangered by cuts in appropriations intended to help overcome these
    unfortunate limitations.
        Catholic school Title I students are particularly concentrated in
    the lowest income communities. The current Title I implementation study
    found that 53 percent of nonpublic school students are in the most
    poverty-impacted quartile of school districts, compared to 45 percent
    of public school Title I students. Private and religious school Title I
    students are more likely than public school Title I students to live in
    the most poverty-impacted districts in the country.
    Need for Capital Expense Funds:
        In 1985, the U.S. Supreme Court held, in Aguilar v. Felton, that
    public school Title I teachers could not enter the premises of
    religiously affiliated schools in order to provide Title I services.
    Administrators quickly had to devise off-site methods of serving
    approximately 185,000 students. A major obstacle was the cost
    associated with the rent, purchase or maintenance of facilities and
    similar capital expenses. In about half of the cases, LEAs were able to
    continue Title I services to religious school students at nearby
    facilities, or in vans or mobile classrooms already available or
    provided through special state or local appropriations. The other half
    of students lost services, some for a few months, some longer, some
    permanently.
        There is disagreement over the precise number of students served,
    or those who were eligible but lost services, or those who should have
    been served, but never were. But all agree that services have not
    recovered to the pre-Felton numbers or quality. The most recent
    reliable data available from the U.S. Department of Education shows the
    recovery reached approximately 177,200 in the 1993-94 school year but
    declined to 173,000 in the 1994-95 school year.
        Congress stated that its intent with regard to the ``Capital
    Expense'' provision was ``to provide sufficient funding to enable needy
    LEAs, to the extent possible, to restore Title I services for private
    school children to their pre-Aguilar v. Felton levels and
    quality''.(House Report: 100-95)
        In the summary of its report on ``Capital Expenses'' the GAO
    (February 26, 1993, p. 3) concluded that only 14 of 52 SEA offices
    believed their states were reaching ``almost all'' or ``all'' (80
    percent or more) of eligible private and religious school students. The
    median response was that the state was reaching about half of eligible
    private and religious school students.
        The clearly negative impact of the Felton decision on the delivery
    of services to eligible Title I students enrolled in Catholic and other
    religious schools have most recently been outlined on April 15, 1997 in
    arguments before the United States Supreme Court as the chancellor of
    the New York public schools asked to be relieved from the injunction
    granted in the Court's 1985 decision. We are hopeful that the Court
    will agree with those arguments and reverse their original decision in
    Felton. Even with a reversal of Felton, it is imperative to continue
    ``Capital Expense'' funding during any transitional period, so we avoid
    a period of disruption similar to that found after the 1985 Supreme
    Court decision.
    Problems With use of Capital Expense Funds:
        ``Capital Expense'' funds are needed to increase the degree of
    recovery that has been attained since 1985, and to expand that recovery
    to serve all the students who are eligible for Title I services. But it
    appears that even when funds are available, they are not necessarily
    being used to maximize services to students. There is a clear failure
    to set appropriate priorities. States are still using these funds to
    reimburse districts for past expenditures, Congress should end this
    procedure and limit expenditures to costs for needs identified in the
    current fiscal year. While it is true that a number of states returned
    unspent ``Capital Expense'' funds, it needs to be stated as strongly as
    possible that other states easily used up all of these returned funds.
    There are a number of states that have current needs in this area that
    are unmet. In addition, some LEAs, particularly small and rural
    districts, do not qualify for enough funds to purchase or lease
    adequate facilities for providing services.
        The question of program quality is of equal importance. There is a
    serious concern, expressed in the report from the Congressionally
    mandated National Assessment of Chapter 1 Independent Review Panel,
    that in many instances the quality of services delivered is markedly
    inferior to what is needed for the program to succeed in making an
    educational difference. While some programs are very good, many are
    clearly troubled.
        All Title I program services to students in religious schools
    require that the student is to be ``pulled out'' of the home classroom.
    There is common agreement among educators that this approach, even in
    public schools, is disruptive of sound educational progress. In such
    programs the student is clearly identified as a Title I student,
    different from the rest. In addition, the student misses instruction
    taking place in the regular classroom situation. Programs that take
    place outside the school, where students must travel, are especially
    disruptive and often physically dangerous. The 1993 GAO study found
    parental rejection of services is another major problem. Much of this
    rejection is based on the parental evaluation that these ``pull-out''
    services are viewed to be of poor quality and disruptive to the
    student's overall education.
        The use of computers to provide services has expanded rapidly,
    growing from 5 percent in 1986-87 to 32 percent in the most recent
    survey. The use of computers requires close evaluation. To be most
    effective, computers need to be integrated into the total curriculum.
    Unless regular classroom teachers have access to computer resources,
    the computer cannot become an integral part of the student's course of
    study. Under current interpretation of the Felton decision, the
    placement of the computers forbids the presence of a teacher, and the
    teacher aide who is present may not be involved in actual instruction.
    The computer programs often only provide basic education, rather than
    providing challenging educational opportunities for the student.
        Finally, Catholic and other religious school students with restored
    services receive assistance an average of only 3.5 days a week,
    compared to 5 days in the public school program. The shorter program is
    predictably less effective, especially when set in the context of the
    difficulties Title I teachers have in planning and consulting with the
    religious school student's regular classroom teacher.
    Conclusion:
        We urge the Committee to recommend the full funding of the
    ``Capital Expenses'' at the same level of $41.114 million, as
    appropriated by Congress when it passed its fiscal year 1997 budget and
    as proposed in the Clinton Administration's fiscal year 1998 budget. We
    also urge that the Committee consider fully funding Title I, as well as
    work to improve the operation of Title I programs, in order to be
    better able to reach all eligible public, private and religious school
    students, and to provide programs and services of the highest quality
    possible. While we are aware of the budgetary problems that the
    Congress faces we urge the Committee, in an effort to provide the
    broadest scope of services to those most at risk, to act responsibly
    and provide full funding for the other Titles of Public Law 103-382,
    including Titles II, III, IV and VII, as well. There is a need to give
    special emphasis to maintaining funding for Title VI of Public Law 103-
    382 at its authorized level of $370 million, since the Clinton
    Adminsitration continues to ``zero fund'' this important program which
    continues to have broad support from all aspects of the education
    communitiy--public, private and religious. It is a flexible program
    that serves the varied needs of students in almost every school in the
    country. Finally, we recommend that the Committee consider empowering
    parents to obtain supplemental services for their children, from
    approved tutors or specialists when other options have not been
    responsive to the needs of those children. We believe that this option
    would be effective in restoring services to students deprived of
    services in small school districts currently not eligible for Capital
    Expenses.
                                     ______

        Prepared Statement of the National Indian Education Association
        The National Indian Education Association (NIEA), the oldest
    national organization representing the education concerns of over 3,000
    American Indian and Alaska Native educators, school administrators,
    teachers, parents, and students, is pleased to submit this statement on
    the President's fiscal year 1998 budget as it affects Indian education.
    NIEA has an elected board of 12 members who represent various Indian
    education programs and constituencies from throughout the nation. Every
    year, NIEA holds an annual convention which provides our members with
    an opportunity to network, share information, and hear from
    Congressional leaders and staff as well as federal government officials
    on policy and legislative initiatives impacting Indian education.
        We commend President Clinton for a budget that emphasizes the
    importance of education for all citizens of this country, including the
    First Americans. There are some programs such as the Office of Indian
    Education (OIE) in the Department of Education, Impact Aid, and higher
    education scholarships which deserve further consideration for
    increased funding and will be discussed in this testimony.
        President Clinton has proposed several new education initiatives
    for fiscal year 1998 which will require a major investment of federal
    dollars. Programs like his school construction and education technology
    initiatives are desperately needed by schools operated and funded by
    the Bureau of Indian Affairs (BIA). Programs for American Indians
    attending the nation's public schools will also benefit from these and
    other federal education initiatives. These funds will help this nation
    achieve true educational equity through fulfillment of its federal
    education responsibility to American Indians and Alaska Natives.
                the federal responsibility for indian education
        Indian education programs are not affirmative action nor race-based
    educational efforts but result from the historical and legal
    relationship between Indian nations and the United States. This
    government-to-government relationship is a Constitutional relationship
    whereby the U.S. officially recognizes some 557 Indian and Alaska
    Native governments as separate and distinct nations. This political
    relationship includes broad federal authority and special trust
    obligations unique only to American Indians and Alaska Natives. Tribal
    governments are independent of State governments even though tribal
    lands may lie within a state's boundaries. Many federal statutes
    provide for direct funding to tribal governments so that Tribes can
    design and administer their own programs. Among activities undertaken
    by tribal governments are the administration of their own police
    departments, courts, schools, health facilities, social service
    programs, the development and enforcement of environmental codes, etc.
    Many of these are programs formerly administered by the BIA and IHS,
    but are now carried out by Tribes under authority of the Indian Self-
    Determination and Education Assistance Act (Public Law 93-638) and the
    Indian Education Act of 1972 (as amended by Title IX, Public Law 103-
    382). Tribally chartered boards now administer more than 90 BIA-funded
    elementary and secondary schools and 29 tribal colleges.
        Tribal governments administer an array of federal education
    programs--Johnson O'Malley, Head Start, Child Care and Development
    Block Grants, Adult Education, vocational education and scholarships.
    Additionally, Indian parent committees have direct input into the
    Indian Education Act program in public and BIA schools, and tribal
    governments have a statutory role in the Impact Aid program. Many
    tribes, with community input, have developed tribal education codes and
    standards. Tribes and tribal colleges are active in the development of
    curricula which embody Native languages, tribal history, tribal
    government and other courses of study specific to the unique needs of
    their communities.
        NIEA's testimony will discuss Indian education and related programs
    under the authority of the Labor-HHS-Education Appropriations
    Subcommittee including President Clinton's proposed national school
    construction initiative.
                            department of education
    Office of Indian Education (OIE):
        The Office of Indian Education (OIE) is authorized by the
    Elementary and Secondary Education Act, Title IX, of Public Law 103-
    382, the Improving America's Schools Act (IASA) of 1994. OIE was first
    authorized by the Indian Education Act of 1972 (Title IV, Public Law
    92-318) after a 1969 Senate Special Subcommittee on Indian Education,
    chaired by Edward M. Kennedy (D-Ma) reported: ``Our national policies
    for educating Indian children are a failure of major proportions. They
    have not offered Indian children--either in years past or today--an
    educational opportunity anywhere near to that offered the great bulk of
    American children.''
        We would venture to say that given the many accomplishments in
    educating American Indians since 1972, there are many deficiencies
    which continue to plague the long-term success of Indian education. Not
    the least of which is the level of academic achievement Indian people
    have not yet acquired as is evidenced by consistently low scores on
    standardized tests. Federal programs which have made the greatest
    positive impact, ironically, are those that have been eliminated or
    where funding has been drastically reduced.
        For fiscal year 1998, the Department of Education has requested
    $59.75 million to fund 1,219 formula grants to Local Education Agencies
    (LEAs) and BIA schools and $2.9 million for program administration for
    OIE. NIEA supports full funding of $83 million which, in addition to
    LEA grants, would include a reinstatement of certain discretionary
    grant programs, funding for the National Advisory Council on Indian
    Education (NACIE), and additional resources for the Presidential
    Executive Order on Tribally Controlled Community Colleges.
        For the past two years, no discretionary programs have been funded
    in OIE. This lack of continuity has created a situation where only two
    programs are available to meet the post-secondary education needs of
    American Indians and Alaska Natives beyond high school. NIEA requests
    the Subcommittee's support in reinstatement of funds for programs in
    adult literacy, teacher training, professional development, and Indian
    fellowships. The BIA is the only remaining agency with an Adult
    Education component for American Indian adults who are striving to
    attain their high school equivalency. Unfortunately, this program does
    not reach those Indian adults in non-reservation or urban settings.
    Without access to these programs that have traditionally moved American
    Indian and Alaska Native learners beyond high school, prospects for
    continued gains in academic achievement are greatly reduced.
        NIEA is aware that the authority for funding of OIE programs has
    been transferred from Interior to the Labor-HHS-Education
    Appropriations Subcommittee this session. Until this recent
    development, OIE was the only program in the Education Department
    funded from a separate appropriation. As such, funding for OIE was
    often at odds with other priority programs of the BIA. NIEA believes
    that education for American Indians and Alaska Natives is a trust
    responsibility of the federal government no matter if these students
    attend public or reservation-based schools. The fact that almost ninety
    percent of American Indian students attend public schools does not, in
    our opinion, preclude the trust responsibility issue.
        The following are NIEA's recommendations regarding OIE funding by
    category:
        Formula Grants to LEAs.--For fiscal year 1998, the U.S. Department
    of Education has requested $59.9 million to fund formula grants to LEAs
    and $2.8 million for program administration of the Office of Indian
    Education (OIE). NIEA supports this request which will assist over
    422,000 American Indian and Alaska Native students attending public and
    BIA schools. This base funding ensures K-12 Indian students in
    America's schools receive appropriate academic assistance as envisioned
    by the Indian Education Act of 1972.
        Discretionary Grants.--NIEA asks the Subcommittee to support the
    reinstatement of discretionary grant funds which support programs in
    adult literacy, teacher training, Indian fellowships, and professional
    development on many Indian reservations. OIE's support has been
    critical to providing opportunities for American Indian and Alaska
    Native adults to obtain their General Educational Development Degrees
    (GEDs). Funding for Adult Education ended in fiscal year 1996 even as a
    $5.4 million request was forwarded to congress. A similar situation
    occured in fiscal year 1997 as well. This program is especially
    critical since funding for the BIA's adult education program has been
    steadily decreasing over the past 3 years from $3.5 million in 1995 to
    the fiscal year 1998 request of $2.3 million. The 1990 Census reported
    that 65.5 percent of American Indians and Alaska Natives over the age
    of 25 had graduated from high school compared with 75.2 percent of the
    general population. Of the total American Indian adults living on
    reservation and trust lands, only 54 percent were high school graduates
    or higher. Regarding approximate dropout rates, the U.S. Department of
    Education NELS 88 study followed a sample group of students from 1988
    to 1992 and reported that 25.4 percent of American Indian students
    dropped out of high school as compared with 11 percent for the total
    population.
        OIE Fellowship Program.--Another major loss has been the OIE
    Fellowship Program, which was eliminated in fiscal year 1997. It was
    previously cut by $1.3 million (over 75 percent) in fiscal year 1996
    from its fiscal year 1994-95 amount of $1.7 million. At the higher
    level, the program awarded more than 150 American Indian and Alaska
    Native students annually. When the fiscal year 1997 Indian fellowship
    request is added to the $2.6 million reduction in BIA graduate student
    aid and to the $2 million cut from IHS scholarships in fiscal year
    1996, the result is that nearly $8 million has been eliminated in
    scholarship aid for Indian students over the past two years. We are at
    a loss to understand why scholarship resources have suffered such a
    massive and seemingly inequitable cut, especially when one compares
    academic achievement and financial aid resources available to the
    general non-Indian public.
        National Advisory Council on Indian Education (NACIE).--NIEA
    supports full funding for NACIE in the amount of $400,000 in fiscal
    year 1998. The Department has requested only $50,000 for the Council to
    hold meetings, make its report to Congress, and advise the Department
    on Indian education issues. In fiscal year 1996 partial-year funding in
    the amount of $120,000 was made available to NACIE to close its office
    with no funds appropriated in fiscal year 1997. Despite this, the
    twelve presidentially-appointed council members are continuing to
    fulfill their terms since legislation mandating their duties still
    exists. Congress established NACIE in 1972 as a critical component of
    the Indian Education Act, and for over 20 years it has been the only
    federal advisory committee concerned with all areas of Indian
    education. NACIE's role is crucial to ensuring that Indian education
    needs are addressed at the agency and national levels. NIEA requests
    that its funding be restored to a level sufficient for it to continue
    meeting its Congressionally-mandated functions and responsibilities.
        Tribal Colleges Executive Order.--NIEA also supports the
    Department's request to fund the Presidential Executive Order
    initiative on tribal colleges. The recommended amount of $200,000 has
    been designated to come out of OIE funding. NIEA would like to see the
    funding level increased to $400,000 with the entire amount covered by a
    non-OIE source, perhaps from the Office of Postsecondary Education.
    Other DOE Indian Education-Related Programs:
        Goals 2000.--NIEA supports the fiscal year 1998 request of $620
    million, a $129 million increase from fiscal year 1997. The BIA receive
    a one percent set-aside from the total Goals 2000 allotment to offer
    school reform planning activities, and to explore the feasibility of
    schools converting to contract or grant school status. The fiscal year
    1998 estimate for BIA school is $3.8 million while the Alaska
    Federation of Natives receive $50,000.
        Alaska Native Education Equity.--NIEA supports the fiscal year 1998
    request of $8 million for programs dealing exclusively with the
    education of Alaska Natives. Programs authorized and requested for
    fiscal year 1998 under this activity include: Alaska Native Educational
    Planning, Curriculum Development, Teacher Training and Recruitment, $5
    million; Alaska Native Home Based Education for Preschool Children, $2
    million; and Alaska Native Student Enrichment, $1 million. Since the
    BIA does not fund any elementary or secondary schools, and funds only
    minimal educational support in Alaska, we support the department's
    funding request.
        School-to-Work Opportunities.--NIEA supports the fiscal year 1998
    request of $200 million, a continuation of the fiscal year 1997 enacted
    amount and a $20 million increase over the fiscal year 1996 level for
    the Department of Education. An additional $200 million request covers
    the Department of Labor in a joint partnership. Up to one-half of one
    percent of funds are reserved for programs serving youths in BIA-funded
    schools and are an important source of the school's funding package. At
    this amount the set-aside for Indian programs is $2 million, which
    would cover continuing grants made in 1997 serving 31 tribal community
    partnerships.
        Title I.--NIEA supports the fiscal year 1998 request of $8.077
    billion, an increase of $379 million over the fiscal year 1997 level,
    for grants to local educational agencies (LEAs). One percent of these
    funds are appropriated to support programs at BIA-funded schools.
    Indian students located on and near reservations come from the poorest
    communities in this country since most reservations can not produce
    enough revenue-generating activities to fund such programs. Title I
    funds are therefore vital to guaranteeing that Indian children receive
    appropriate educational services due to their disproportionately low
    economic situation. The BIA portion under Title I is $47.8 million with
    an estimated 23,900 (42 percent) Indian students in BIA schools
    benefiting.
        Impact Aid.--NIEA does not support the Administration's request of
    $658 million for fiscal year 1998, which is a decrease of $72 million
    from the fiscal year 1997 level of $730 million and a decrease of $35
    million from the fiscal year 1996 level of $693 million. We urge the
    Committee to support restoring the $72 million to insure that
    programmatic changes intended to make the program more need-based will
    take place. NIEA also supports the National Indian Impacted Schools
    Association's (NIISA) position that Congress shall provide the
    necessary funding in fiscal year 1998 to implement the reforms
    applicable to the Impact Aid Program as set forth by Public Law 103-
    382.
        Over 2,000 LEAs enrolling over 20 million children are provided
    assistance under this program. Impact Aid provides basic program
    dollars to ensure that the educational needs of federally-connected
    children are guaranteed. The fiscal year 1996 estimate of the number of
    Indian children whose school districts benefit from Impact Aid's basic
    support payments is 116,000. An additional 14,000 Indian children with
    disabilities also generate funds due to the added school district costs
    of educating them. In fiscal year 1996 both categories generated
    approximately $338 million for public school districts nationwide.
        Education for Homeless Children and Youth.--NIEA supports the
    fiscal year 1998 request of $27 million, a $2 million increase above
    the fiscal year 1997 level. Of the funds appropriated, an amount
    representing one percent is to be provided to the BIA for Indian
    students served by BIA-funded schools. The fiscal year 1998 budget
    request includes $100,000 for BIA programs to provide services to
    homeless Indian children and youth to attend school. The most recent
    BIA estimate of the number of homeless American Indian students reached
    by this program is 540.
        Bilingual Education.--NIEA supports the Administration's request
    for $160 million for Instructional Services, $14 million for Support
    Services, and $25 million for Professional Development. For purposes of
    this Act, BIA-funded schools, tribes, and tribally-sanctioned
    educational authorities are considered LEAs. They are therefore
    eligible for discretionary grants to implement and improve
    instructional programs and professional development designed to help
    limited-English-proficient students master the English language and
    challenging curriculum geared to high standards. The fiscal year 1998
    estimate of Bilingual funds going to BIA schools is over $712,000.
        State Special Education Grants.--NIEA supports the Adminstration's
    request of $3.9 billion for fiscal year 1998, a $141.3 million increase
    over the fiscal year 1997 level. One percent of these funds go to BIA-
    funded schools to educate students with disabilities, and an additional
    one-quarter of one percent of funds go to tribes with BIA-funded
    schools for services to children ages 3-5. This funding usually
    represents 60 percent of the funding spent on education and related
    services for disabled Indian students. It is critical because of the
    increasing number of Indian children with disabilities--approximately
    7,400 students for the current school year. The total Education
    Department estimate for State Special Education Grants for BIA schools
    is $39.7 million.
        State Special Education Infants and Families Grants.--NIEA supports
    the Administration's request of $324 million for fiscal year 1998, an
    $8.2 million increase over the fiscal year 1997 level. A quarter of one
    percent of these funds go to tribes with BIA-funded schools for
    coordinating the provision of early intervention services to children
    with disabilities ages 0-2 years and their families. The estimated
    amount going to BIA schools in fiscal year 1998 is $4 million and will
    serve approximately 1,600 Indian students.
        Technology Literacy Challenge Fund.--NIEA supports the
    Administration's request of $425 million for fiscal year 1998. This
    program, which targets schools with the greatest need, provides grants
    to states to implement strategies enabling their schools to fully
    integrate technology into their curricula in order to help students
    become technology literate. The BIA is a 51st state under this program
    receiving about two-thirds of one percent of the program's funds. It
    received $1 million in fiscal year 1997 to fund grant applications from
    BIA-funded schools. The fiscal year 1998 amount going to BIA schools is
    $2.1 million. In order to create technology-literate environments in
    all BIA-funded schools, however, funding in the area of $9.5 million to
    $22.5 million would be needed--based on a recent Rand Corporation
    estimate of $450 per student to create technology-rich schools.
    American Indian and Alaska Native students must not be left out of any
    initiatives that can provide them with the skills necessary to navigate
    the Information Superhighway, and which prepare them for academic and
    employment success. We urge the Subcommittee to support increased
    funding to the BIA for this program.
        Vocational Rehabilitation State Grants.--NIEA supports the
    Administration's request of $2.25 billion for fiscal year 1998, a $71
    million increase above the fiscal year 1997 level. One-half of one
    percent of these funds, or approximately $12.4 million, are set-aside
    for grants to tribes to provide vocational rehabilitation services.
        Vocational Education.--NIEA supports the Administration's request
    of $1.2 billion for vocational education programs nationally. Of that
    amount at least $16 million should go to the tribal projects
    allocation, and another $2.9 million would continue to be earmarked for
    two tribally-controlled institutions. NIEA also supports the tribal
    colleges' recommendations on the reauthorization of the Carl D. Perkins
    Vocational Education Act: that the resources continue for the Indian
    vocational education program as provided under Title I, Section 103,
    and that any changes to this section require tribal consultation; that
    funding continue for the Indian vocational postsecondary education
    program as provided for under Title III, Section 385; that a new
    Tribally-Controlled Community College program is needed; and that a
    national center for American Indian vocational education research and
    data collection be established and funded.
                    department of health and human services
    Administration for Children & Families:
        NIEA echos and supports the National Congress of American Indians'
    (NCAI) recommendations to give the newly-formed Tribal Services
    Division of the Department's Office of Community Services the funding
    necessary to carry out its mission of making Public Law 104-193, the
    ``Personal Responsibility and Work Opportunity Reconciliation Act of
    1996,'' workable in Indian Country under the government-to-government
    relationship.
    Indian Health Service (IHS):
        Indian Health Professions Scholarships.--The Indian Health
    Professions sections 103, 104, and 114 under Title I of the ``Indian
    Health Care Improvement Act'' provides authorizations to support
    scholarship recipients, loan repayment to health professionals, and
    temporary employment during non-academic periods. The Administration's
    fiscal year 1998 request for this program is $28.3 million, a $1.5
    million increase over the fiscal year 1997 enacted level. NIEA,
    however, supports the National Indian Health Board's (NIHB) recommended
    level of $29.7 million.
        School-Based Health Education Programs (IHS and BIA).--NIEA
    successfully advocated in 1992 to obtain a new authorization in the
    Indian Health Care Improvement Act (IHCIA) to establish school-based
    health education programs. NIEA's fiscal year 1998 request is $5
    million for both programs ($3 million for IHS and $1 million for BIA).
    Under Section 215 of the IHCIA, the Secretary of DHHS is authorized to
    award up to $15 million in grants to tribes to develop comprehensive
    school health education programs for children on reservations enrolled
    in grades K-12. The programs could be established in public, contract,
    grant and private schools.
        The area of school health education receives minimal support from
    both the BIA and IHS. Through an intra-agency agreement, IHS receives
    $230,000 annually from the Centers for Disease Control and Prevention
    (CDC) for school health education programs, which is the entire budget
    for this effort. On the other hand, BIA has no specific funds for this
    purpose.
        We ask the Committee to recommend a funding level for this
    authorization of at least $3.5 million for grants to tribes, and that
    $1.5 million be provided to the BIA to fulfill its requirements under
    Section 215 of the IHCA to institute health education programs in its
    schools.
        HIV/AIDS Prevention.--According to the CDC, there were 1,434
    reported and verified diagnosed cases of AIDS among Native Americans as
    of June 1996, approximately a 12 percent increase over the amount CDC
    reported in October 1995 (1,283). Although CDC's announcement on
    February 27, 1997 that the number of deaths nationally from AIDS had
    declined, including a 32 percent drop among American Indians and Alaska
    Natives, it did not address the issue of individuals with AIDS living
    longer and needing long-term care.
        We note there is no line item for AIDS medication in IHS's budget,
    and that the President's budget does not cover the cost of drugs to
    treat Indian and Alaska Native people infected with HIV. The fact
    remains, however, that for these individuals, IHS is the only source
    for their medical care. Despite recent improvements in the treatment of
    HIV/AIDS, such as the development of more effective drugs, far too many
    of our people are being denied this type of care because IHS is not
    being funded to provide it. NIEA supports the National Congress of
    American Indians' (NCAI) recommendation that a restricted line item be
    included in IHS's budget to cover the cost of AIDS-related treatment.
        Furthermore, while NIEA supports the fiscal year 1998 request of
    $3.8 million for HIV/AIDS Prevention, which is only a slight increase
    from fiscal year 1997, we cannot impress strongly enough upon the
    Committee the need for additional funding to be made available to
    combat this dreaded disease.
        NIEA recommends a significant increase in actual funding to all
    HIV/AIDS education and prevention programs within IHS. NIEA also urges
    the Committee to impress upon the Department to implement the final
    recommendations of the President's Advisory Council on AIDS Services
    Committee regarding Native American AIDS Care Issues.
    Other DHHS Indian Education-Related Programs:
        Administrative for Native Americans (ANA).--NIEA supports a funding
    level of at least $36 million for ANA for fiscal year 1998, an amount
    $1.1 million higher than the President's request. Although the
    Administration for Native Americans (ANA) is a relatively small agency
    of the Department of Health and Human Services, its impact on Indian
    Country is immense. ANA provides funding for tribes and non-profit
    Indian organizations to encourage economic development strategies,
    environmental management, and language retention and preservation
    projects. Its mandate makes this agency uniquely situated to help
    Indian and Alaska Native people address their economic and social
    needs.
        Native American Languages Act Grants.--NIEA supports continued and
    increased funding for Native language grants in fiscal year 1998. In
    fiscal year 1996, ANA awarded approximately $1.8 million for these
    grants, yet the real need approaches $10 million. Although the ``Native
    Language Act of 1992'' authorized a funding level of $2 million in
    fiscal year 1993, such an amount has been never been appropriated. We
    urge the Subcommittee's support for funding at $2 million so that
    tribes may have the resources to implement language preservation and
    enhancement projects.
        Head Start.--NIEA supports the fiscal year 1998 request of $4.3
    billion, an increase of $324 million over the fiscal year 1997 level.
    In fiscal year 1997 nearly $99 million was available for Indian Head
    Start, although the estimated need is over $400 million. We applaud the
    Administration's efforts over the past two years to enhance Head Start
    programs. NIEA believes that there is a real need to reach out to
    tribal entities that are not currently being served by the Head Start
    Bureau. Out of 557 federally-recognized American Indian/Alaska Native
    tribes only 130 are Head Start grantees. These tribes provided services
    to 18,870 children in fiscal year 1997. Efforts should be made to
    expand the program in Indian County. This is critical given the
    increasing population of Indian and Alaska Native children between 0-5
    years of age.
        Child Care and Development Block Grant (CCDBG).--NIEA supports an
    fiscal year 1998 request of not less than $59 million for Indian tribes
    and tribal consortia. This was the amount appropriated in fiscal year
    1997. The total fiscal year 1998 budget for the CCDBG program is $1
    billion. We commend the Administration's commitment to providing low
    income families with access to child care services since most Indian
    reservations and rural Native communities, lack child care facilities
    and services. There are currently 237 tribal entities and consortia
    which in total serve over 500 Indian tribes and Alaska Native villages.
        NIEA supports the efforts of the National Indian Child Care
    Association in trying to expand child care resources to Indian Country
    and their efforts to secure at least a three percent set-aside to
    American Indian and Alaska Native grantees. We understand that the
    fiscal year 1998 funding formula is based on a 2 percent set-aside,
    down one per cent from fiscal year 1997. However, due to a new program
    components and expanded legislation there may be a larger appropriation
    amount to pull Indian dollars from according to CCDBG officials. NIEA
    supports continuation of the current funding mechanism for childcare
    block grants whereby funds flow from the central office to the regions
    directly to tribes.
                              department of labor
    DOL Indian Education-Related Programs:
        Job Training Partnership Act.--The Administration's request of
    $52.5 million is a sharp decrease of $14.1 million from Program Year
    1995 for the Job Training Partnership Act (JTPA) Section 401 Native
    American Program. This program is designed to improve the economic
    well-being of Native Americans through the provisions of training, work
    experience, and other employment-related services and opportunities
    that are intended to aid the participants to secure permanent,
    unsubsidized jobs. This program is critical to both reservation and
    urban grantees who are largely unskilled, poorly educated, and living
    in poverty. We therefore request the Congress to support funding of
    this important program at its fiscal year 1995 enacted level of $65
    million.
        Summer Youth Employment.--NIEA supports the fiscal year 1998
    request of $871 million for the Summer Youth Employment Program, an
    increase of $236 million from the fiscal year 1996 level. The Indian
    set-aside is approximately $15.8 million. On most Indian reservations
    this program provides the only means of employing young Indian men and
    women who are vulnerable to a myriad of economic and social ills such
    as drug and alcohol abuse, teen pregnancy and fatherhood, and
    unemployment due to little or no job skills. Additionally these young
    people are at a higher risk of dropping out of school or attempting
    suicide due to the lack of positive environmental influences.
                proposed national school construction initiative
        President Clinton has proposed a $5 billion school construction
    initiative which would leverage $20 billion over five years for
    nationwide school construction and renovation. The proposed $5 billion
    would help pay for up to half the interest that local school districts
    incur on school construction bonds, or for other forms of assistance
    that will spur new state and local infrastructure investment. Interior
    Secretary Bruce Babbitt has asked the Office of Management and Budget
    to include a 10 percent set-aside for BIA-funded schools. Currently the
    amount designated for the BIA and Trust Territories is 2 percent or
    $100 million. BIA's amount is 60 percent of the total and equals $60
    million. Unlike public schools however, the BIA will be unable to
    leverage additional funds through issuance of school bonds as will some
    of the larger territories.
        An increase of the set-aside amount to ten percent would allow the
    BIA to address its backlog of school repair projects, including school
    replacements and ensure schools, that don't have the option to issues
    construction bonds, are equitably considered. The estimated backlog of
    BIA schools needing repair and renovation is $670 million. NIEA
    wholeheartedly supports the Secretary's request for a 10 percent set-
    aside for BIA-funded schools if the President's school construction
    initiative is enacted.
        In conclusion, we want to thank the Subcommittee for continuing to
    give its attention to the issues and concerns we have raised in our
    testimony. In light of the federal government's trust responsibility
    for the education all American Indians and Alaska Natives, and on
    behalf of our members, we urge the Subcommittee's support for
    maintaining or increasing funding for the Indian education and related
    programs discussed herein at the levels we have recommended.
                                     ______

       Prepared Statement of Lynda Johnson Robb, Chairman of the Board,
                          Reading Is Fundamental, Inc.
        Thank you for the opportunity to offer recommendations on the
    Inexpensive Book Distribution Program, Improving America's Schools Act,
    Title X Part E, Sec. 10501. Reading Is Fundamental, Inc. (RIF) operates
    this program under contract to the U.S. Department of Education.
        Last year Congress allocated $10.3 million of the Education
    appropriation for the Book Program. We respectfully urge you to
    appropriate for Fiscal 1998 the $12 million requested by the
    Administration.
        The additional funding would allow RIF to reach 300,000 more
    children who most need our reading services.
        Although the Book Program costs the taxpayer little, it plays a
    unique and unduplicated role in helping America's children acquire
    reading skills. Its reach and popularity extends throughout the 50
    states, Washington, D.C., and the U.S. offshore possessions.
        Last year 3.3 million children participated in activities to
    encourage reading and learning, and selected more than 10 million free
    books to keep--all at a cost to the government of only $3.19 per child
    for the entire year.
        More than 195,000 unpaid community volunteers--37 percent of them
    parents of the children served--stepped forward to bring these services
    to the children in their communities. Local RIF projects receive
    Federal money only for books, none for administration or other program
    costs. And RIF provides no Federal dollars at all to any group that can
    operate the Book Program without them. Thus the program involves a
    major citizen commitment. I know, for I have personally volunteered for
    RIF for 30 years.
        As a further service to children's literacy, for every Federal
    dollar invested, RIF and the local programs last year leveraged an
    additional $5.06 in private funds, goods, and services. For example,
    RIF was able to secure private funding to increase the RIF services
    throughout northern Mississippi.
        Yet for all our efforts, there remains a huge, unmet demand for the
    highly acclaimed Book Program. Right now RIF cannot fund its waiting
    list of 2,290 Federal Book fund applications to serve 1.3 million
    children, 83 percent of whom are educationally at risk.
                           suited to every community
        Reading Is Fundamental and the Book Program are an American success
    story--an exemplary model of a Federally funded program that helps
    citizens help themselves to invest in children's capacity to learn.
    There is no other agency or institution--private, state, or Federal--
    that provides a comparable literacy service.
        The Book Program is distinctive in additional ways: it draws local
    and national corporations, foundations, and service organizations into
    the cause of children's literacy. Among those joining forces with RIF
    are such major entities as Chrysler Corporation, J.C. Penney,
    Ameritech, Mazda, General Electric, Kiwanis International, PTO's &
    PTA's, Lions Clubs, Jaycees, Rotary Clubs, and numerous sororities,
    fraternities, and local businesses.
        The Book Program has the unique ability to go to places where you
    would expect it to--such as schools and libraries--but also where you
    wouldn't: health centers, housing projects, migrant farm worker camps,
    crisis shelters, hospitals, juvenile detention centers, community
    centers, Native American Reservations, Even Start, Head Start, and
    other early childhood and family literacy centers. RIF goes wherever
    children go.
        The Book Program honors local wisdom. With general guidance and
    technical assistance from RIF, local citizens make all the major
    program decisions: which children to serve, what reading activities to
    use, which books to place before the children. Their projects reflect
    the needs of their communities' children and enhance other services
    they provide. RIF has often been praised for its avoidance of red tape,
    lack of intervening bureaucracies, and its responsiveness to local
    volunteers. By respecting community choices, the RIF program strikes a
    successful balance between the national and the local, the Federal
    government and the private citizen.
                              a national priority
        RIF and the Book Program decidedly address a demonstrated national
    need and priority: to ensure that American children grow up literate.
    From the White House, to the school house--in family living rooms and
    corporate board rooms--Americans have recognized just how critical it
    is to provide the tools to get children reading more and reading
    better. Yet the RIF/Book Program can reach but a fraction of the young
    people who need its valuable reading services.
        Throughout the country there is growing alarm about the
    deteriorating reading ability of our young people and what that bodes
    for the nation.
        Federal studies tell us that 40 percent of fourth grade students
    cannot read at even the most basic level. Of American high school
    seniors, 60 percent cannot read at the level they should to interpret
    correctly and apply what they've read.
        Meanwhile, business leaders lament that young people are arriving
    for work unable to read instruction manuals, fill out forms, or write a
    well-constructed paragraph.
        Employers increasingly test job applicants' reading abilities. The
    American Management Association reported that since 1990 more than a
    third of those tested were found wanting. Meanwhile, 89 percent of the
    jobs being created require high levels of literacy. Yet less than half
    our nation's students have achieved those levels.
        Reading skills translate into earnings: an adult who reads better
    earns more--about $400 more per week than one with poor literacy
    skills. Poor reading has another cost: one to the U.S. economy of about
    $225 billion a year in lost productivity alone.
        Literacy is a national heritage of strength. Americans' literacy
    skills continue to fuel the nation's triumphs.
        Low literacy contributes to school drop-out rates; adolescent
    pregnancy; unemployment; poverty; and homelessness. Reading skills are
    arguably the most important tool our children need for navigating
    through life's challenges toward independence, opportunity and
    achievement. But as the studies show, we are only too often failing our
    children.
                                a success story
        However, the reading studies of the past decade or so have also
    pointed toward solutions. Almost universally high on the list is that
    students at all levels who read best are those who read for fun during
    their own time, have reading materials at home, and whose parents
    encourage their reading and learning.
        The Book Program clearly is part of the solution, for its key
    elements are access to books, incentive to read them, books in the
    home, parent/family involvement, and reaching children early.
        Only too frequently, the Reading Is Fundamental/Book Program
    provides the only books in a child's home and their first exposure to
    the pleasure and importance of reading. And the program often provides
    the first comfortable avenue for parents to become involved with their
    children's reading.
        Competent readers are made, not born.
        The Book Program succeeds because it provides:
      --Customized, enjoyable reading activities for children and families.
      --New books that children want to read, can choose, take home to keep
            and read at no cost to them or their families.
      --Materials and how-to guidance to help parents encourage children's
            reading.
      --Encouragement from adults who share the pleasure and benefits of
            regular reading.
        The Book Program also makes possible the nationwide network of
    local projects that attracts private support to enhance the Federally-
    supported services. These privately-funded initiatives include
    programs: to train Head Start parents to operate RIF projects and
    encourage reading at home; to teach young parents how to bring up their
    children as readers; for family literacy training for low-literacy
    parents in adult learner programs; to provide an intensive reading
    challenge for first graders that encourages and rewards children's
    reading while enlisting parents, teachers and local volunteers to build
    community-wide support for launching lifelong readers; for a program
    that promotes book sharing and reading between fifth and sixth graders
    with kindergarten and first grade students; for an at-home reading and
    poster contest to motivate young readers across the country; for
    reading corners for children in homeless shelters; for guidance
    booklets for parents; and a supplemental curriculum that brings
    together science, technology, reading and other disciplines to enhance
    children's enthusiasm for each.
                          cost-effective and credible
        RIF's operation of the Federal Book Program and all it leverages
    has earned many awards and widespread acclaim for accountability,
    efficiency and success in getting children to read.
      --RIF earned one of only seven A+ ratings for U.S. Charities from the
            American Institute of Philanthropy.
      --RIF ranked as one of the 20 most credible charities in the nation
            in a Chronicle of Philanthropy survey.
      --RIF was named one of the nation's 10 ``Charities that Make a
            Difference in the Lives of Children and Families'' by Parenting
            magazine.
    RIF is Fiscally Accountable:
        RIF is independently audited each year, sometimes twice a year. In
    all its years of operating the Book Program, not so much as one penny
    has been misused or gone unaccounted for.
    RIF is Programmatically Accountable:
        Each year RIF provides to the Congress, the Department of
    Education, and the public a detailed accounting of programs it has
    funded, where they operate, the children they serve, the books that
    have been placed in children's hands, and what the program has
    accomplished overall.
    RIF and the Book Program Get Results:
        Studies, surveys, reports, assessments, and unsolicited comments
    most frequently cite the following results of the RIF/Book Program:
        Children Read More.--parents, teachers, and the children report
    that the children spend more time reading books, such as these comments
    from a Raytown, Missouri parent: ``Our children cherish their RIF
    books. They all seemed to have `their nose in a book' after RIF.''
    From an Anchorage, Alaska program:
        ``RIF has undoubtedly created an enthusiasm for reading. Students
    are excited about the distributions and proud of their new books.''
        Children--and Their Families--Use Libraries More.--Both school and
    public librarians report increased library use as a result of the RIF/
    Book Program. RIF students in schools ask for particular authors,
    titles and themes. And public librarians report that more families use
    the libraries when their children are involved in RIF.
    A New Cumberland, Pennsylvania librarian wrote:
        ``Since starting the RIF program, I have noticed an increase in
    library circulation, and added knowledge and awareness of authors.
    Parents indicate student reading increased, and the parents themselves
    gained an understanding of appropriate reading materials.''
    In Stephens, Arkansas:
        ``RIF is making a difference. Our students enjoy the `silent
    reading time' at school more. They trade their books with each other.
    They look forward to Library Day and going to the library in between
    RIF distributions.''
        Reading Abilities Improve.--RIF receives many reports from teachers
    and school administrators that the Book Program increases reading
    abilities.
    Like this one from Seattle, Washington:
        ``Our students continue to make positive gains in the Reading
    Comprehension section of the California Test of Basic Skills (CTBS). We
    are convinced that having RIF books in their possession encourages them
    to read and contributes to these gains.''
    From Arnold, Missouri:
        ``Our reading scores in the lower grades are soaring. On the
    Missouri Mastery Achievement Test (MMAT) the vocabulary and reading
    comprehension scores of the children served in the RIF program have
    increased.''
    From Dunmore, Pennsylvania:
        ``A number of factors are indicative of how the RIF program is
    contributing to our educational goals for our children. Among the most
    notable are our improved reading scores, increased library circulation,
    and a willingness to share books with classmates.''
        Children's Attitude Toward Learning Improves.--As children become
    better readers, they become better learners.
    Such as the Even Start teacher in El Paso, Texas, who reports that:
        ``Without a doubt, the books made available by RIF have given the
    children and parents the resource needed to spend quality time
    together, reading and talking about a favorite story. This type of
    interaction creates various opportunities for further learning.''
    A Migrant Education teacher in Davenport, Iowa tells us:
        ``Our student population is very mobile, and RIF is an educational
    program they can count on. We know that RIF not only helps build
    reading skills but also a positive attitude about school.''
    And in Elko, Nevada, we hear:
        ``When students talk among themselves about a good book they got at
    RIF, or inquire about more books by that author at the library, you
    know that reading is happening, and that your RIF day was a success. It
    inspires discussion of ideas between students and their teachers, also,
    which improves interaction between all ages of people.''
        Parents Become More Involved With Their Children's Reading and
    Learning.--Parent volunteers get involved in all aspects of operating
    their RIF/Book program.
    The program in Norristown, Pennsylvania reports:
        ``RIF has certainly made a difference in the parent volunteer
    programs at the elementary schools. Volunteer efforts have increased at
    each school. RIF has provided parents the means to enter schools, and
    to realize that there is nothing to fear. Many parents now routinely
    volunteer for classroom activities.''
    From Longview, Washington we hear:
        ``We know we are making a positive impact on parents. Many share
    stories of how RIF has changed their own attitudes toward reading.
    Others have told us that volunteering for children and keeping up with
    their children's education have encouraged them to return to school.''
        In sum, the RIF/Book Program has amassed a demonstrable record of
    results in getting young people to read.
        It is a locally-driven program that attracts the services and
    contributions of the community and citizen volunteers from all walks of
    life, and:
      --It gets books into homes, and homes into reading.
      --It is greatly in demand, and widely acclaimed.
      --It is lowcost, accountable, and cost-effective.
        The Inexpensive Book Program as operated by Reading Is Fundamental
    contributes to the reading progress of America's children in tangible
    ways that draw rare applause for Federal spending:
    From a parent in Owen, Wisconsin:
        ``RIF contributes a positive attitude toward government spending.
    Parents enjoy seeing their taxes put to good use and returned to their
    children.''
    From a teacher in Louisville, Kentucky:
        ``This program is not a program that wastes money.''
    An Oregon school administrator for whom the Book Program has the
            smallest budget of the many programs he oversees:
        ``I strongly feel it is the best and most effective expenditure of
    educational funds I have seen.''
        This program achieves--dollar for dollar, child by child--far more
    than it costs. It is a time-tested, sound program that gets young
    people to read and develops their interest in learning. It meets a
    critical need as we approach the 21st century.
        For these reasons, we respectfully urge the Congress to appropriate
    $12 million for fiscal 1998 for the Inexpensive Book Distribution
    Program.
                                     ______

      Prepared Statement of Cornelius J. Pings, President, Association of
                             American Universities
        The Association of American Universities, on behalf of the National
    Association of State Universities and Land-Grant Colleges, the American
    Council on Education, and the Council of Graduate Schools, appreciates
    this opportunity to submit for the record testimony in support of the
    fiscal year 1998 budget for the National Institutes of Health (NIH) and
    the Department of Education's graduate education programs. These
    associations represent all of the public and private research
    universities across the country. We want to note that we, along with
    other higher education associations, have separately submitted
    testimony to the Subcommittee regarding the Department of Education's
    important student aid programs.
                         national institutes of health
        First, we wish to express our deep appreciation for this
    subcommittee's efforts last year to provide a 6.9-percent increase in
    funding for the NIH, and for all of this subcommittee's efforts over
    the years to make funding for biomedical research a top priority. Your
    unwavering commitment to federal investment in biomedical research has
    resulted in a level of support for the NIH that clearly reflects
    widespread bipartisan support for this vital federal role.
        NlH-supported research has made enormous contributions to the
    health and quality of life of all Americans and for many people around
    the world. Indeed, the partnership that has been forged between
    research universities and the federal government through the NIH is the
    envy of the world. Last year a group of business leaders wrote that the
    partnership of ``research and educational assets of American
    universities, the financial support of the federal government and the
    real-world product development of industry has been a critical factor
    in maintaining the nation's technological leadership through much of
    the 20th century.''
        AAU, NASULGC, ACE and CGS all support the Ad Hoc Group for Medical
    Research Funding's endorsement of the NIH fiscal year 1998 professional
    judgment budget as the best and most reliable estimate of the level of
    funding needed by NIH to sustain its high standard of scientific
    achievement. As you know, the NIH professional judgment budget for
    fiscal year 1998 calls for a 9 percent increase over fiscal year 1997.
    This funding level would increase the number of top-quality, peer-
    reviewed research grants to over 8,000 and would allow the NIH to take
    advantage of new and emerging opportunities in biomedical science, as
    well as to increase the size of these grants to keep pace with
    inflation.
        In addition to adequate funding of research project grants, we
    believe that research training is a critical element in maintaining a
    strong biomedical research enterprise, and we urge careful
    consideration of the research training portion of the NIH budget. The
    AAU and others have worked closely with officials at the NIH to develop
    an agency-wide policy on funding for training grants that emphasizes
    quality but also recognizes the importance of maintaining a robust and
    diverse base of scientific talent critical to ensuring the future
    success of our nation's research efforts. There are other mechanisms,
    such as research assistantships funded through NIH research grants, for
    maintaining our base of scientific talent, and we are concerned about
    the federal erosion of support for a number of these mechanisms and
    federal programs. The AAU has convened a Committee on Graduate
    Education that is looking at a whole host of graduate education issues,
    including mechanisms for federal support, and we will keep the
    Subcommittee apprised of any recommendations the AAU Committee may
    make.
        The research university community has traditionally been an
    advocate for the programs included in the National Center for Research
    Resources (NCRR), and this year is no exception. NCRR programs have
    been extremely valuable to research institutions and cost-effective to
    the government. For example, in an era of limited resources, the Shared
    Instrumentation Grant Program (SIG) offers a mechanism for leveraging
    scarce federal dollars to ensure the availability of sophisticated,
    expensive scientific equipment. SIG grants make it possible to purchase
    the kind of equipment that cannot be funded through the RO1 grant
    mechanism but is nonetheless essential to the ability of our scientists
    to move forward in many important research areas. NCRR also administers
    the limited amount of funding that is provided for the highly
    competitive extramural construction and renovation funds. And the
    university-based General Clinical Research Centers (GCRCs) provide the
    state-of-the-art instrumentation, skilled laboratory technicians,
    research nurses, and specialized laboratory and computer facilities
    essential to conducting much of the clinical research underway today.
        Finally, we are aware that this subcommittee has held an interest
    in the costs of research and the federal policies that govern federal
    reimbursement of them, and has raised some concerns about them in the
    past. The research community continues to examine the current system of
    cost reimbursement to ensure that the system is accountable and
    efficient. The AAU has convened a committee of university presidents
    and chancellors to explore these issues, as well as a technical
    advisory group composed of faculty and administrative representatives
    from a number of both public and private universities, to assist the
    AAU committee in its efforts. Over the years we have worked closely
    with OMB and OSTP on a variety of issues related to the costs of
    research, and we urge that these issues continue to be addressed
    through the Executive Branch regulatory process where they may be
    considered as part of an overall government-wide policy.
        These are challenging times for research universities. For those
    with academic health centers, they are particularly challenging given
    the enormous changes we are experiencing in the managed-care
    environment and the impact that possible changes in Medicare and
    Medicaid funding will have on our teaching hospitals and training
    programs. But these are also some of the most exciting times for new
    discoveries and breakthroughs in basic and clinical biomedical and
    behavioral research. The federal investment in biomedical research has
    made possible the pioneering innovations that have improved so
    dramatically our health, economic well-being, and quality of life. The
    members of this subcommittee have fought long and hard to provide the
    funding levels needed to support this research. In this difficult
    budgetary time we ask that you continue this fight and maintain your
    support for the NIH and the millions of people who benefit from the
    federal government's investment in medical research, and for those who
    will depend on it in the future.
              department of education graduate education programs
        Education at all levels will be key to sustaining and enhancing the
    competitive position of the United States in the global economy.
    Graduate education will play a particularly critical role in this
    country's capacity to discover and develop new knowledge, producing the
    scientists, engineers, and scholars responsible for expanding the
    frontiers of knowledge and the preservation of our intellectual and
    cultural heritage for succeeding generations of students and citizens.
        Much of the work of doctorate recipients will be conducted outside
    of colleges and universities: almost 50 percent of 1995 PhD recipients
    had employment commitments outside the academic sector. Physical
    science and engineering PhDs are particularly important to industry: of
    1995 PhD recipients, 44 percent of physical science PhDs and 62 percent
    of engineering PhDs had employment commitments in industry.
        Master's degree recipients may go on to pursue doctoral degrees;
    more often they are educated to begin state-of-the-art careers in
    industry, strengthening our nation's economic performance in global
    competition.
        It is important to the nation that a sufficient portion of our most
    talented college graduates pursue graduate education. Those students
    with the talent and motivation to succeed in graduate study are also
    likely to be those students with the broadest array of competing
    employment options. To complete a doctoral program, students must
    commit typically to five years or more of additional study, not only
    foregoing employment income but often incurring substantial additional
    debt beyond that carried from their undergraduate education.
        Providing incentives to pursue graduate education and reducing the
    financial costs of that education are critical to assuring that our
    graduate programs continue to attract some of the nation's best talent.
    The federal government needs to play a central role in attracting
    talented students into graduate programs. Because the students who
    receive graduate degrees are a national resource whose employment
    prospects are not bounded geographically, states are reluctant to
    invest substantially in graduate education. Similarly, industry
    investment in graduate education is as likely to benefit a given
    company's competitors as itself. Financially strapped universities
    invest what they can, particularly in underfunded areas such as the
    humanities and social sciences. Graduate students themselves are likely
    to have accumulated substantial debt to finance their undergraduate
    education and incur the additional cost of foregone income to pursue
    graduate education. But federal investment in graduate education and
    academic research has richly repaid this nation, providing a strong
    base of knowledge and talent on which government, industry, and
    educational institutions have drawn.
        The Department of Education's Title IX graduate fellowship programs
    are an important part of the federal government's investment in
    graduate education. The provision of competitively awarded, multiyear
    fellowships to graduate students bestows an honor on their recipients
    and provides a level of predictable financial support that offsets the
    considerable sacrifices required by graduate study.
    Reauthorization of the Higher Education Act: A Proposal for
            Consolidation
        We understand that the current pressures of the federal budget make
    it difficult to fund many important federal programs. Therefore, the
    higher education community has developed a proposal for consolidating
    the Department's Title IX programs to preserve their most critical
    elements while reducing the number of programs and reducing the federal
    cost in dollars and personnel of administering them.
        Our proposal would consolidate the Title IX programs into a single
    National Graduate Fellowship Program with three complementary
    components:
      --Traineeships in areas of national need: block grants to strong
            academic departments and programs in areas of national need, to
            be used by those programs to recruit and support talented
            students to pursue the highest graduate degree offered in those
            areas.
      --Portable fellowships in humanities, social sciences, and the arts:
            fellowships awarded directly to students to pursue graduate
            study at the institution and program of their choice; awarded
            in the humanities, social sciences, and the arts, such a
            program would provide the most effective means of allocating
            resources in these broad disciplines, where student choice
            provides the best match of student interest and academic
            program quality.
      --Grants to increase participation of students from underrepresented
            groups: grants to institutions to increase the number of
            students receiving graduate degrees from groups
            underrepresented in graduate education, with awards based on
            academic quality of programs and the institution's track record
            of recruiting and graduating students from underrepresented
            groups and placing them in academic positions.
        All three components would be competitively allocated on the basis
    of merit. Students would receive a need-based stipend and a tuition
    waiver; institutions would receive an educational allowance in lieu of
    tuition and fees. All grants would be for three years.
        The administration of the program would be contracted out to
    nongovernmental, not-for-profit organizations for program
    administration, particularly the merit review components of the
    program. The contracting provision would reduce the demand for federal
    employees to manage the program and would allocate program
    administration to organizations and personnel with strong records of
    quality administration of such programs.
        We are aware that this new approach would require authorizing
    legislation. We have already sent our proposal to the Congressional
    education authorizing committees, and are committed to working for the
    enactment of such legislation as part of this year's Higher Education
    Act reauthorization. In the meantime, we request that the Subcommittee
    continue to fund new and continuing fellows and trainees from the
    existing Title IX programs in fiscal year 1998 in order to ensure that
    sufficient resources and programmatic functions are available for the
    consolidated approach. Our specific fiscal year 1998 funding request is
    outlined below.
    Fiscal Year 1998 Recommendation
        We request a total of $42.7 million for the fiscal year 1998
    appropriation for Title IX programs as follows:
      --Graduate Assistance in Areas of National Need: A $26.8 million
            appropriation, the amount requested in the Administration's
            budget, would allow the GAANN program to fund existing programs
            and award new traineeships in areas of national need.
      --Javits Fellowships: A $5.9 million appropriation, the amount
            awarded in fiscal year 1997, would allow the Javits program to
            fund continuing fellows and hold a new competition.
      --Harris Graduate Fellowships: A $10 million appropriation would
            provide funding for new competitions for both master's and
            doctoral Harris fellows and preserve this critical program as
            we head into the reauthorization of the Higher Education Act.
    Conclusion
        For many years, Congress has recognized the need for federal
    investments in graduate education and biomedical research and has
    provided sufficient resources to maintain these important programs. We
    very much appreciate the Subcommittee's long-standing bipartisan
    support for both graduate education and biomedical research.
                                     ______

    Prepared Statement of Stephen A. Janger, President, Close Up Foundation
        Mr. Chairman, distinguished members of this Subcommittee, my name
    is Stephen A. Janger and I am President of the Close Up Foundation. I
    am grateful for the opportunity to submit this testimony in support of
    the Allen J. Ellender Fellowship Program administered by the Close Up
    Foundation. The past support of this Subcommittee has made it possible
    for thousands of students and educators to take part in a unique civic
    education program that benefits not only the participants but their
    communities and eventually society as a whole. We sincerely thank you
    for your support.
        Educating youth about their responsibility for being informed civic
    participants should continue as a major effort. As you know, there is a
    precipitous decline of confidence in all of our institutions. We hear
    that people fear that the problems facing our society will not be
    adequately addressed. There is increasing polarization among citizens,
    lack of trust, and lack of civility. Our youngest citizens can be part
    of the solution if they are given access to the kinds of educational
    opportunities Close Up provides. The need is more urgent than ever
    before. To continue Close Up's efforts to reach students, we
    respectfully request $3.0 million from the fiscal year 1998 Labor,
    Health and Human Services, Education and Related Agencies
    Appropriations bill.
        As we begin our twenty-sixth year of providing our civic education
    program to students and educators, we have an opportunity to reflect on
    the accomplishments of the past quarter century. Of the many things we
    have accomplished, there are perhaps three things of which we are
    proudest. First and foremost is the fact we have stayed true to our
    mission of outreach to ``all kinds of students.''
        And, we have succeeded by reaching students from low-income
    families, whether they are in urban, rural, or suburban settings,
    disabled students, students from ``at-risk'' schools, students who are
    children of migrant workers, students from remote, isolated parts of
    the country, and others who make up the ignored or underserved student
    populations of this country.
        This outreach to ``all kinds of students'' has allowed us to
    involve underserved student constituencies, as well as accomplish a
    second goal of producing a program with a diversity of participants
    unparalleled by any other civic education organization's program. In
    addition to income and geographic diversity, we have students who are
    the academic elite, the class leaders, and students who struggle to
    stay in school. We know that these students benefit from meeting each
    other sharing Close Up's experiential learning program.
        A third Close Up theme that has remained constant throughout our
    twenty-five years is our message. We strive to teach all of our
    participants that regardless of where they are from, they share the
    common responsibility of being informed citizens who participate
    responsibly at every level of civic involvement. This message may be
    one reason that so many of our student and teacher participants return
    to their communities to conduct and participate in Close Up Local
    Programs.
        During the last twenty-five years, there have been an estimated
    760,000 participants in Close Up Local Programs. These programs have
    taken many forms, but generally they mirror the Close Up Washington
    Program with a focus on local issues and concerns rather than national
    ones. Some of the local programs are multi-generational. Many involve
    diverse segments of the community. In these state and local programs,
    the message of informed citizenship is multiplied to tens of thousands
    of citizens at relatively no cost to the federal government. Best of
    all, perhaps, is that citizens of all ages participate, and students
    who did not have the opportunity to come to Washington can still be
    involved in a program that develops civic literacy and competence.
        Close Up Local Programs, outreach to underserved constituencies,
    and diversity of participants are only a few of the many factors that
    make Close Up different from other civic education organizations,
    something that seems to be lost on the Department of Education's budget
    office. Last year in response to report language included by the House
    Subcommittee in House Report 104-659, we worked with the Department of
    Education's budget and program offices to produce the report that this
    Subcommittee received a copy of on December 30, 1996. For ease of
    reference, I will refer to this report as the Report in this testimony.
    Despite our strong protests and the objections of the Department's own
    program officer, the Department's cover letter to the Report included a
    reference to Close Up conducting a program similar to other civic
    education organizations that do not receive federal funds. Such
    misinformation has been included for the last four years in the
    Department of Education's (DEd) budget justification material.
        While it is not my intent to disparage any other organization, it
    is unfair and misleading of the DEd to compare us in this way. This is
    not a simple emotional boast. There are factual assertions that serve
    to support the important distinction between Close Up and other civic
    education organizations. For example, Close Up is the only civic
    education organization that includes disabled students in its programs;
    Close Up is the only organization that encourages and provides
    technical support for local programs, thereby expanding the reach of
    our work many times over; Close Up is the only organization that offers
    focus programs for new American students; Close Up is the only
    organization that offers separate teacher programs; Close Up is the
    only organization that offers fellowships to students based only on
    economic need; and, most importantly, Close Up is the only organization
    that offers fellowships to every participating school.
        The DEd mentions that another civic education organization offers
    scholarships to its participants, and that that organization does not
    receive federal funds. Again, I would not denigrate any other
    organization; however, if other organizations offer scholarships to
    their students at all it is on an extremely limited basis, and the
    scholarships have academic and/or geographic criteria placed on them. I
    do not know the intricacies of any other civic education organization,
    but I do know that no other organization has provided more than 95,000
    fellowships, to ``all kinds of kids'' from every state in America and
    from every background imaginable.
        A great deal of what I point to with great pride would not have
    been possible without the support of this Subcommittee through the
    years. The Allen J. Ellender Fellowship funding provided by this
    Subcommittee has served as the seed element that has allowed the
    Foundation to expand the reach of the fellowship program to thousands
    of students annually. These students would not have been able to
    participate without the help of an Ellender Fellowship. For Close Up
    program year 1995-96, the average family income for a family with four
    dependents receiving fellowship assistance was $17,826. Obviously, any
    program participation from students with such limited economic means
    would be almost impossible without Ellender Fellowship assistance.
        As we stated in the Report, the Close Up Foundation will continue
    without Ellender Fellowships; but, the composition of the program will
    not be the same. The vital mix, the blend of constituencies, will
    diminish and participation will be for those who are able to pay for
    it. From the very inception of the Ellender Fellowship program, the
    legislative intent has been to provide economically disadvantaged
    students (and their teachers) the same opportunity to participate in
    Close Up's program as their more affluent peers--those who are able to
    pay.
        The Ellender Fellowships have provided to all students the
    opportunity to learn about responsible citizenship; the opportunity to
    really connect with their representatives and governmental
    institutions; and the opportunity to try to become effective
    contributors in our society. Ellender Fellowships are the equalizer and
    the multiplier that have enabled tens of thousands of students to
    participate in Close Up's unique program.
        We have used our Ellender Fellowships wisely and well. Furthermore,
    no one should think that the Foundation has sat back and depended
    entirely on federal funding. In fact, although it is a vital component
    of our revenue stream, the Ellender Fellowships comprise a relatively
    small percentage of our total revenue. This is another fact that
    distinguishes Close Up from many other federal grantees--we have not
    relied solely on the federal government for the vast majority of our
    revenue.
        If simple cost-effectiveness and the multiplier effect of Ellender
    Fellowship dollars are not sufficient justification for continuation of
    funding, the simple fact that the Ellender Fellowships are used, as
    they were intended, for a program that works and works well should
    justify their continuation. In this time of increasing public distrust
    of government, and the erosion of trust in our most basic institutions,
    Close Up programming is designed to help to break down the negative
    stereotyping of Congress and the government and, at the same time,
    expose students to the realities and the difficulties of forming public
    policy. By visiting Washington, meeting with their elected
    representatives, and participating in workshops and seminars, the
    students learn first hand the multiplicity of issues and the time
    demands that face every Member of Congress. Educators continue to
    emphasize that there is no textbook that can communicate these messages
    as effectively as Close Up's experiential learning program. There are
    many groups calling for more initiatives to revitalize America and
    renew our civic purpose. There can, unfortunately, be no renewal and
    revitalization until our young people become fully engaged and
    understand their role as citizens.
        From the very beginning, Close Up has spent an extraordinary amount
    of time and energy raising private donations for the Foundation. There
    have been years when we have been more successful than others, but
    there has never been any portion of any year in which we have not been
    out there trying to secure support for civic education programming.
        Unfortunately, even our most successful years have not always
    produced the results we wanted for the fellowship program, because some
    donations are ``donor directed'' to other areas of the Foundation's
    work. Donations are like the ``uncontrollables'' in the federal budget.
    Donors dictate which program is to receive their donation; and, the
    choice for the Foundation has been either to accept the funds for
    specific civic education initiatives or to leave it. Obviously, there
    is no choice but to take the donation and use it to further civic
    education overall, even though we would have preferred to use it for
    fellowships.
        It is the uncontrollable aspect of private funding that makes
    Ellender Fellowships so critical. The Ellender Fellowships enable us to
    go to an ``at risk'' school and provide the seed money to ensure that
    students who have severely limited economic means can participate in
    the program. Ellender Fellowships provide us with the entry to get into
    schools to explain and discuss the program and thus provide students
    with the opportunity to participate in a program that has been
    demonstrated to have a positive, life-transforming effect.
        We know this not only from anecdotal data we have received through
    the years, but from present-day information. We have alumni in every
    walk of life, a remarkable number of whom hold positions in local,
    state, and regional governments, as well as in the federal government.
    One of our alumni is a United States Senator. We have many, many alumni
    who work on the Hill. Some of the Members of this Subcommittee likely
    have staff who are past Close Up participants. Although we know we
    cannot take total credit for their interest and success, a consistent
    message we receive from our alumni is that their participation in the
    Close Up program is what sparked their interest in becoming involved in
    the area of politics and public policy service.
        We have alumni, as well, who are now in the business sector--young
    leaders who say their understanding of public policy making has made
    them more effective in their fields. Many of our ``alumni'' are
    volunteers, work on boards, and continue their participation in
    bettering their communities.
        During the last year, Close Up has begun an effort to create an
    active alumni program. We have explored the creation of such a program
    in the past, but the estimated return on the investment of very scarce
    resources did not seem to justify going forward. This is another area
    in which we sharply disagree with the DEd. In its cover letter to the
    Report, the DEd stated that it believed the alumni effort was
    particularly noteworthy as a development task. While we are committed
    to developing an alumni program and are hopeful it will produce some
    financial benefit to the Foundation, we do not expect significant
    results for several years and in all likelihood the financial
    contribution to the Foundation will be modest.
        Developing an alumni program pits us directly against colleges,
    universities, and professional schools, all of which have long
    standing, high profile development efforts. Although we believe that
    our almost 480,000 alumni remain loyal and interested in our welfare,
    most are still students or in their budding professional career stage.
    It would appear unrealistic for us to expect to be able to compete
    effectively against institutions that were part of a person's life for
    four years or more for the dwindling dollars of private individual
    giving.
        As we noted in the Report, private giving, by individuals and
    corporate entities to secular, nonprofit education organizations, has
    been on a downward trend. According to several recent studies,
    charities--especially those serving the disadvantaged--will not receive
    enough in private donations to offset scheduled reductions in federal
    programs. In fact, Julian Wolpert, professor of urban affairs at
    Princeton University, has found that the most optimistic estimates
    predict that contributions to charities might make up for only five
    percent of the total of lost federal funding.
        The combination of these factors and others relative to the
    realities of raising private donations present a very bleak picture for
    the Foundation's efforts to reach underserved student populations.
    Termination of the Ellender Fellowship program is likely to result in
    the severe reduction or possible elimination of participation of ``at-
    risk'' schools and economically disadvantaged students.
        Despite this, the Foundation is continuing its effort to secure
    support, financial and otherwise, from the private sector. The
    partnership among business, philanthropy, government, and educators
    that has worked so well in the past to serve our young people needs to
    remain in tact, however. Should the government withdraw its modest
    support, it will be much more difficult to convince other members of
    the partnership to maintain their efforts.
        Mr. Chairman, all of us at the Close Up Foundation are aware that
    the support of this Subcommittee has been a critical element for
    Ellender Fellowship funding; and, we are very grateful. I realize that
    these are very difficult budgetary times. I believe, however, that the
    relatively small amount of $3,0 million we are requesting for Ellender
    Fellowships is money well spent because of the return it makes not only
    in the numbers of students affected but in the long-term contribution
    made to America's civic literacy.
        I will be glad to answer any questions or to provide any
    information. Thank you very much.
                                     ______

                                Related Agencies
    Prepared Statement of the National Federation of Community Broadcasters
        Thank you for the opportunity to submit testimony on behalf of the
    National Federation of Community Broadcasters, or NFCB, which is the
    sole national organization of community oriented non-commercial radio
    stations.
        Community radio fully supports $325 million in funding for the
    Corporation for Public Broadcasting in fiscal year 2000. Federal
    support distributed through the CPB is an unreplaceable resource for
    rural stations and for those stations serving minority communities. In
    the case of the rural and minority stations, CPB support may not ever
    be replaced and the goal of universal, local, non-commercial radio
    service will never be achieved.
        In larger towns and cities, sustaining grants from CPB enable
    community radio stations to provide a reliable source of noncommercial
    programming--about the communities themselves. Local programming is an
    increasingly rare commodity in a nation that can hear and view news
    from around in the world every thirty minutes.
        The NFCB respectfully submits two requests to the Subcommittee.
    First, we ask that the Subcommittee recommend to the CPB to continue
    the funding priority for rural radio, especially sole service
    providers, stations with minimal donor bases or service areas with
    limited programming alternatives, and community radio stations. Second,
    we recommend that existing mandates on CPB funding remain in place
    until there a full analysis of CPB's mission for public broadcasting
    and, if necessary, programs are developed to achieve that mission.
     Maintain funding to sole service, rural, and stations reaching
            underserved audiences.
        The NFCB requests that the Subcommittee include with its fiscal
    year 2000 CPB appropriation report a recommendation that CPB give
    funding priority to public radio stations that serve rural and unserved
    areas, sole service stations and stations reaching underserved
    audiences. Our request echoes language included in reports from House
    and Senate subcommittees on CPB appropriations in recent years.
        Beginning in fiscal year 1992, the Corporation of Public
    Broadcasting established grant programs to support public radio
    stations serving extremely rural communities and underserved audiences.
    In fiscal year 1997, grants to the most rural stations totaled $754,715
    for support to 23 stations; the average grant was $32,814 per station.
    In 1997, grants to other rural stations and those serving underserved
    audiences totaled $7,970,236 for support to 65 stations; the average
    grant was $122,619 per station.
        With Congressional direction such as given above, these critical
    grant programs for especially important stations will continue. Without
    such language these grant programs, which represent only 15 percent of
    the $59,650,000 direct radio share of the CPB appropriation, are at
    risk of being significantly reduced or even eliminated.
        In Senate Report 104-145, these grant programs are encouraged with
    the language: The Committee directs CPB in allocating reduced funding
    to consider the impact on rural radio and TV studios, especially sole
    service providers, stations with minimal donor bases or service areas
    with limited video programming alternatives, and community radio
    stations. The Committee directs the CPB to give priority to stations
    which serve rural, underserved, and unserved areas and sole service
    providers.
        Similar language has been included House reports on the CPB
    appropriations. We are asking that the Subcommittee consider including
    such a recommendation with the fiscal year 2000 appropriation report.
    Maintain Current CPB Mandates Pending Review
        Our second request is to maintain current mandates on CPB funding
    pending a full review which will take place during the coming
    reauthorization hearings. The mandates are the result of past
    Congressional actions following oversight hearings during the
    reauthorization process. One of the mandates that the NFCB fully
    supports is the requirement for CPB to support public radio stations
    which are the sole source of broadcasting in the areas they serve.
    Until that mandate was imposed, extremely rural, and extremely
    important community radio stations were denied funding support from
    CPB. While there may be some mandates that are out of date and no
    longer in the best interests of public broadcasting, without a full
    discussion and comprehensive analysis, there is no feasible way to
    decide which mandates should be lifted.
        Thank you for your consideration of our testimony.
        The NFCB is a twenty year old grassroots organization which was
    established by, and continues to be supported by our member stations.
    Large and small, rural and urban, the NFCB member stations are
    distinguished by their commitment to local programming and community
    participation and support. NFCB's 90 Participant members and 136
    Associates come from across the United States, from Alaska to Florida;
    from every major market to the smallest Native American reservation.
    While the urban member stations serve communities that include New
    York, Minneapolis, San Francisco and other major markets, the rural
    members are often the sole source of local and national daily news and
    information in their communities. NFCB's membership reflects the true
    diversity of the American population: 40 percent of the members serve
    rural communities and 34 percent are minority radio services.
        On community radio stations' airwaves examples of localism abound:
    on KILI in Porcupine, South Dakota you will hear morning drive programs
    in their Native Lakota language; throughout the California farming
    areas around Fresno, Radio Bilingue programs five stations targeting
    low-income farm workers; in Barrow Alaska, on KBRW you will hear the
    local news and fishing reports in English, and Yupik Eskimo; in
    Dunmore, West Virginia, you will hear coverage of the local school
    board and county commission meetings; KABR in Alamo New Mexico serves
    its small isolated Native American population with programming almost
    exclusively in Navajo; and on WWOZ you can hear the sounds and culture
    of New Orleans throughout the day.
        In 1949 the first community radio station went on the air. From
    that day forward, community radio stations were reliant on their local
    community for support through listener contributions. Today, many
    stations are partially funded through the Corporation for Public
    Broadcasting grant programs. CPB funds represent about 15 percent of
    the larger stations' budgets, but often can represent up to 40 percent
    of the budget of the smallest rural stations.
                                     ______

    Prepared Statement of Martha McSteen, President, National Committee to
                     Preserve Social Security and Medicare
        The National Committee to Preserve Social Security and Medicare
    appreciates the opportunity to comment on the value of an increased
    federal investment in medical research through the National Institutes
    of Health (NIH) to save lives and reduce health care costs. As a
    grassroots advocacy organization representing millions of senior
    Americans, we strongly support a substantial and growing investment in
    basic biomedical research.
        The members of the National Committee thank this Subcommittee for
    making the NIH one of your highest priorities in the past few years.
    Research conducted through the National Institutes of Health (NIH) has
    had a long tradition of strong bipartisan support and is responsible
    for dramatic improvements in the health and quality of life for all
    Americans. In the 105th Congress, several Senators have called for
    significant increases in NIH funding. Senators Connie Mack, Phil Gramm,
    Bill Frist, Alphonse D'Amato, and Subcommittee Chairman Arlen Specter
    introduced a Senate resolution recommending a doubling of the NIH
    budget over the next five years. Senators Gramm, Mack, and Kay Bailey
    Hutchison also have introduced a proposal to double the amount
    authorized for basic science and medical research for a number of
    research agencies, including the NIH, over a 10-year period.
        Moreover, Senators Harkin and Specter have introduced legislation,
    S. 441, to establish a national fund for health research to
    significantly expand the nation's investment in medical research, over
    and above funding provided to the NIH in the appropriations process. We
    commend the leadership demonstrated by these Senators in support of NIH
    funding, as well as the exploration of alternative methods of providing
    additional funding to supplement the NIH appropriation.
        While we acknowledge the difficult choices that must be made, we
    urge the Subcommittee to continue to view NIH as a high priority and
    increase the nation's investment in basic research in fiscal year 1998.
    In the professional judgement of the NIH, a 9 percent increase over
    fiscal year 1997 is the minimum level of funding needed to sustain its
    high standard of scientific achievement in the coming fiscal year. We
    urge you to appropriate this increase to allow the NIH to continue its
    research efforts that permit Americans to overcome serious illness,
    prevent the onset or progression of disease, and prepare those
    suffering from disease or disability to live independently.
        Investment in medical research returns manyfold in improved health
    and lower health care costs and improves the quality of life for
    individuals and their families. Hundreds of millions of health care
    dollars can be saved annually if ways are found to delay or prevent the
    onset of disorders such as Alzheimer's disease, heart disease, cancer,
    stroke and diabetes and to treat these conditions. Aging research in
    particular is a sound investment as the largest segment of our
    population faces retirement age, and as we are living longer.
        A strategy for preventing age-related disabilities has been
    noticeably absent from the current debate over Medicare's future. At
    present, seventy percent of the cost of Medicare is generated by only
    ten percent of the Medicare population--the chronically ill and
    disabled. As Congress grapples with the rising cost of health care and
    the long term solvency of the Medicare program, they should look for
    answers from research funded through the NIH.
        The best way to reduce the staggering costs of devastating diseases
    that afflict older persons is through basic and clinical research. In a
    1995 NIH report, the annual costs of heart disease alone are estimated
    to be $128 billion. The costs of Alzheimer's disease are estimated to
    be some $100 billion a year. The costs of arthritis are some $65
    billion annually, and the annual costs of diabetes are estimated to be
    $138 billion. Delaying the onset of chronic illnesses such as these
    would result in a significant reduction in nursing home admissions,
    reducing the costs of nursing home care by as much as $35 billion a
    year.
        A recent study by the Center for Demographic Studies at Duke
    University has found that from 1982 to 1994 the chronic disability
    rates for people 65 and older in the United States has decreased almost
    15 percent, due in large measure to medical research. This study proves
    that our nation's investment in medical research is paying off in terms
    of human suffering prevented and economic savings. We must continue to
    build on this success.
        Approximately 4 million Americans suffer from Alzheimer's disease,
    a degenerative disorder that destroys the brain, depriving victims of
    memory and judgement and leaving the patients unable to care for
    themselves. While there is still no cure or effective treatment for
    Alzheimer's disease, NIH-funded researchers have identified a genetic
    marker for Alzheimer's disease that may lead to improved diagnosis and
    treatment. New genetic discoveries related to a protein known as apoE4
    may lead to an effective, inexpensive means of diagnosing Alzheimer's
    disease. Unless a cure or treatment is found, 14 million people will be
    stricken by the middle of the next century. A five-year delay in the
    onset of Alzheimer's disease could reduce this number and save some $50
    billion dollars annually.
        Osteoporosis affects an estimated 25 million Americans (over 80
    percent women) and leads to 1.5 million fractures a year, including
    300,000 broken hips. Fifty percent of hip fracture victims lose the
    ability to walk independently following the break and 12 to 30
    percent--or more than 50,000 individuals--die from complications within
    one year. The direct and indirect costs of osteoporosis are estimated
    to be as much as $20 billion annually. NIH-funded researchers have
    isolated a gene that may help identify individuals at high risk for
    osteoporosis and are using this new knowledge to enhance their
    understanding of the cellular causes of the disease. In addition, NIH-
    funded scientists recently reported on a ``targeted intervention''
    strategy that focuses on a variety of risk factors for falls, such a
    multiple medication use. The intervention reduces the rate of falls
    among older, frail individuals by at least 30 percent.
        Arthritis is ranked the number one health problem of people over
    age 45. Half of all Americans age 65 and older will suffer from some
    form of arthritis by the year 2000. In recent years, researchers have
    gained significant knowledge about how enzymes break down cartilage and
    bone in osteoarthritis, the most common form of the disease. Efforts to
    translate these findings into clinical applications are now on the
    horizon, and success in this area should reduce the future burden that
    this disease places on older persons. Osteoarthritis costs to our
    nation are in excess of $8 billion annually. By delaying the onset of
    this crippling disease by five years, the U.S. could save at least $4
    billion in direct and indirect costs.
        These are just some of the exciting research developments that have
    taken place that hold promise for the treatment of aging-related
    diseases. Unless better ways are discovered to treat, prevent, or
    postpone these diseases, the costs to the nation will grow
    exponentially in the future. The National Committee is aware of the
    funding constraints under which Congress must operate and the difficult
    choices that must be made. However, we urge Congress to continue the
    NIH as a high priority in fiscal year 1998. In recent years, NIH-
    sponsored research has produced major advances in the treatment of
    cancer, heart disease, diabetes and many more disorders that have
    helped save many thousands of lives. Much of the medical research
    funded through the NIH simply would not be conducted with a diminished
    federal commitment.
        On behalf of the National Committee to Preserve Social Security and
    Medicare's five and one-half million members and supporters, we thank
    you for the opportunity to provide comments on this important issue.
                                     ______

     Prepared Statement of the Association of America's Public Television
                                    Stations
        This testimony is submitted by the Association of America's Public
    Television Stations, which represents the 179 public television
    licensees across the country that provide high quality noncommercial
    educational programming and services to the American people. America's
    public television stations are much more than broadcasters; they are
    vital community institutions operating successful public private
    partnerships for more than 40 years.
        The Association of America's Public Television Stations (APTS) and
    its member stations support the Administration's request of $325
    million for the Corporation for Public Broadcasting (CPB) in fiscal
    year 2000. CPB provides financial support to local public television
    and radio stations through Community Service Grants (CSGs) that are key
    to the stations' stability. Every year since 1968, the federal
    government has renewed its commitment to a strong, noncommercial
    educational broadcast operation in this country and we are grateful to
    this committee for its continued support. Without the financial backing
    of Congress, millions of Americans would not be able to avail
    themselves of the valuable services that public television stations
    provide.
        CPB receives the federal money, which is appropriated two years in
    advance of actual spending, and directly distributes 75 percent of it
    to local public television and radio stations for operations and
    programming. The CSGs are the single most important source of funding
    for local stations, and provide, on average, one-sixth of the revenue
    for a public television station. This figure varies widely, however.
    Many small rural stations depend on federal support for up to 30
    percent of their operating budgets.
        Two years ago, at the beginning of the 104th Congress, many newly
    elected officials asked whether financial support of public
    broadcasting was an appropriate role for American taxpayers. The
    American people responded with an overwhelming ``yes'' in a 1995 Roper
    poll they ranked public television third, behind national defense and
    law enforcement, as best value for their tax dollar. Congressional
    offices reported over and over that they had never seen such an
    outpouring of support. Public broadcasting continues to hear this
    message today.
        The American people have effectively communicated that a
    noncommercial, educational public broadcasting system should be
    preserved. Public broadcasters continue to have discussions with
    congressional policy makers to examine ways to plan for long-term
    financial support. Throughout our many discussions we have agreed that
    the core principles of the nation's public telecommunications must be
    preserved. They are:
      --noncommercial character and educational mission
      --creation and delivery of programming of unequaled quality and
            excellence
      --editorial integrity and independence
      --adaptation of new technologies to educational and public service
            purposes
      --universal access to our services
      --local ownership, control and focus of public television stations
        The public broadcasting reauthorization bill that was proposed in
    the 104th Congress focused on a trust fund, that when fully capitalized
    would generate enough income to replace the annual federal
    appropriation. APTS continues to support the concept of a trust fund.
    We are now working with new leadership on the House and Senate Commerce
    committees to develop a reauthorization vehicle that will assure the
    American people continue to receive the services of public broadcasting
    without regard to location or ability to pay. Until an alternative
    funding sources is in place and fully operational, local stations will
    continue to require funding through the annual appropriations process.
        Since fiscal year 1995, federal support for public broadcasting has
    been declining. While this year's request of $325 million may appear to
    be a large increase over fiscal year 1999's $250 million appropriation,
    in reality it is only a modest 2.7 percent increase in real dollars
    from fiscal year 1990. The events of 1995 and 1996 accelerated the
    internal review of how public television does business. Public
    television stations have formed new partnerships with colleagues and
    with other private and public entities to streamline operations and
    expand methods of financing our programs both on-and off-air. Public
    broadcasting is more efficient and will continue to work smarter.
        In Florida, for example, public television stations have pooled
    their resources to consolidate some of their operations. Six of the
    public television stations there now share a programming staff. Other
    Florida collaborations have merged multimarket underwriting sales and
    membership operations.
        Despite all efforts at efficiency--and public broadcasting has
    always provided good return on investment--valuable programs and
    services offered by local television stations cannot be preserved under
    the present declining funding curve. Unfortunately, education,
    educational children's programs and outreach services are the first to
    suffer when funds run short because they are the services that the
    marketplace will not support.
    Education
        GED-ON-TV is an excellent example of a public television
    educational endeavor that also incorporates local outreach. This
    educational series, produced by The Kentucky Network, has enabled
    nearly 2 million adults to acquire a high school equivalency
    certificate. Recent figures from the Bureau of Labor Statistics
    indicate that citizens with high school diploma or equivalency
    contribute $4,980 more per year to their state's economy than do high
    school dropouts. That's almost $10 billion added to our nation's
    economy annually. Multiplied by the 30 or more years Americans spend in
    the workforce and the impact is significant.
        Since its inception in Kentucky in 1975, KET's GED-ON-TV program
    has enrolled over 35,000 students. The number of adults who have taken
    and passed the GED test after viewing the series is approximately
    15,000. The cumulative economic impact for Kentucky alone, based on a
    conservative estimate of only 70 percent of those passing the GED and
    earning an additional $4,000 per year, equals about $900 million added
    to Kentucky's economy over the past 22 years.
        Nationwide, 88,000 students are currently enrolled in this program
    through their local public television stations. These adults are able
    to obtain their diplomas while at home, many while caring for an
    elderly parent, or a disabled child. Others are able to maintain a
    regular job and do their coursework at home without taking more time
    away from their families, especially those who live in rural areas.
    Public television's GED program is also used at adult learning centers,
    federal and state correctional systems and on armed services bases
    worldwide.
        Public television is very proud of its children's educational
    programming. Research does prove that children raised on Sesame Street
    and other public television programs do perform better in school. The
    Ready to Learn project undertaken by public television is centered
    around a daytime block of children's programming. APTS wants to thank
    this committee for the additional support of Ready to Learn through the
    Department of Education. Local stations have expanded the value of
    these programs by providing outreach services to children and their
    parents and caregivers to help them use public television as an
    effective learning tool. Between November of 1995 and March 1996 public
    TV stations conducted 474 workshops for parents and caregivers.
        Critics of public broadcasting often cite cable and network
    television as alternatives to public television's quality children's
    programming. Some programs offered there are excellent, and we welcome
    them as partners in our efforts to teach children. But, the kind of
    local outreach activities mentioned above are not offered by cable
    programmers. Plus, many of our nation's neediest children do not have
    cable in their homes. Most American households now have access to cable
    TV. But more than 35 percent cannot afford, or must choose more basic
    needs rather than spend the $300 to $600 per year that cable costs.
        Public television programs remain the first choice of teachers and
    are the most frequently used in the classroom for good reason. They are
    100 percent devoted to quality programs for children. Public
    television's objective has always been to educate, not to sell. Public
    broadcasting does seek support from its viewers, but a financial
    contribution in not a prerequisite for watching public television
    programs. Most of our preschool viewers are from homes where the
    average income is below $30,000. More than half of the regular viewers
    of public television (59 percent) are from households with an income of
    less than $40,000 a year.
        Public television stations work directly with local schools. They
    broadcast an average of five and a half hours per day of instructional
    programming for classroom use, enabling 1.8 million teachers to use
    quality instructional programming to reach 29.5 million students in
    70,000 schools. Local stations broadcast overnight so that teachers can
    record and build a library of programs. Stations encourage this and
    many publish special guides for teachers as well as supplementary
    materials to facilitate the use of public television programs in the
    classroom. Public television stations work with teachers to enable them
    to use video most effectively, and also offer access to program
    information on the World Wide Web.
        Public television has been a pioneer in new broadcast technologies
    and is working with schools and teachers to enable them to participate
    fully in the information revolution. For example, WSBE in Rhode Island
    recently announced a new project that will connect schools in the state
    to a high speed Internet connection. The project teams the station, the
    state department of education, a private university, and the US
    Department of Commerce in funding the program. Contributions from a
    private individual will ensure the service is available to every
    teacher and school in the state at no cost to them.
        With this committee's support local public television stations can
    help to ensure that students of all ages and abilities have access to
    high quality noncommercial educational and cultural content through the
    best technologies.
        Public television stations have gone beyond what have become almost
    traditional distance learning opportunities, where high school students
    take live, interactive, satellite-delivered courses in advanced math
    and science, social studies and foreign language, arts and humanities.
    Students now take live, interactive field trips through their local
    public TV stations. This February, students had an opportunity to
    participate in Maryland Public Television's third electronic field trip
    to the South Pole. As part of Black History Month, students were able
    to look at African American colonial life in our series of Colonial
    Williamsburg field trips. KET's electronic field trip to a coal mine
    involved over 12,000 students. In addition to field trips, students
    have an opportunity to talk with nationally known writers and Nobel
    Laureates.
        Since the beginning of education reform public television has
    supported massive teacher training efforts. Partnerships have been
    developed not only with state departments of education and universities
    but also with a wide variety of educational organizations. Stations
    continue to provide professional development tied to standards-based
    education and focused on improving instruction. A wide diversity of
    topics has been covered over the years and delivered via satellite and
    with print and on-line support.
        Nationally, public broadcasting has worked closely with the
    National Council of Teachers of Mathematics in developing MathLine, a
    professional development program of training and peer support for
    junior high math teachers to implement the NCTM standards. The program
    has expanded to K-5, and will include senior high math teachers this
    September. MathLine is now available to any teacher with Internet
    access. The Department of Education has been a valuable partner in
    helping to expand MathLine to reach more teachers in more schools and
    APTS wants to again thank this committee for its support of this
    program.
        In 1998, public television will launch ScienceLine. Social
    StudiesLine and Language ArtsLine are in the pipeline for 1999. The
    science teachers' national association will be a full partner in the
    ScienceLine effort. In each case, public television is working with the
    appropriate professional organization to implement the national
    standards in the respective subject area.
        Two-thirds of the nation's colleges have used public television's
    Adult Learning Service (ALS). Local public television stations enable
    400,000 tuition-paying students a chance to earn a college degree
    through television. In the last 15 years, over 3.5 million adults have
    participated in public television's ALS. These generally older students
    often live off campus, are employed and have adult responsibilities.
    Public television helps them move ahead by making a college degree
    accessible.
        A new program, ``Going the Distance,'' is the first stage of the
    Ready to Earn project, which will enable adults to receive an Associate
    of Arts degree totally through public broadcasting telecourses. There
    are 135 colleges now involved with ``Going the Distance.''
    Outreach
        Public television stations are very proud of another non-broadcast
    service that centers on programs that explore local social, educational
    and community issues. These ``outreach'' programs, coordinated through
    the Public Television Outreach Alliance (PTOA), provide viewers with
    examples of concrete actions they can take to improve their lives and
    participate in local action for constructive change.
        Public television has dedicated major resources to programming,
    support materials and activities around the topic of literacy, the
    family, and women's health. Recently, a two year campaign to curb youth
    violence was completed. Later this spring results of these efforts will
    be compiled and presented to Congress.
    Conclusion
        Congress has made a very wise investment in public broadcasting. It
    has helped improve millions of Americans lives every day. APTS hopes
    that the committee agrees with those who benefit from public
    television's services that it as a cost-effective way to reach people
    on critical issues of the day, not as luxury.
        On behalf of the nation's public television stations, APTS looks
    forward to working with Congress to ensure that we have the financial
    resources to continue to provide the American people free access to
    quality, noncommercial educational television.
                                     ______

     Prepared Statement of Robert M. Tobias, National President, National
                            Treasury Employees Union
        Chairman Specter, Members of the Subcommittee: My name is Robert M.
    Tobias, and I am the National President of the National Treasury
    Employees Union (NTEU). Thank you for the opportunity to present NTEU's
    views concerning the fiscal year 1998 funding for the U.S. Department
    of Health and Human Services (HHS), and the Social Security
    Administration (SSA).
        The National Treasury Employees Union (NTEU) represents over
    160,000 federal workers, including employees in HHS's Office of the
    Secretary, the Office for Civil Rights, the Administration on Aging,
    the Administration for Children and Families, the Food and Drug
    Administration, the Health Resources and Services Administration, and
    other HIS operating divisions as well. NTEU also represents the
    Attorney-Advisors at SSA's Office of Hearings and Appeals.
        NTEU is pleased to comment on the budget request President Clinton
    has submitted for the Social Security Administration and Department of
    Health and Human Services for fiscal year 1998. If there is one concern
    on our part, it is that fiscal year 1997 is more than half over and
    little progress has been made regarding agency appropriations for the
    new fiscal year which will begin the first of October.
        As we all know, the Labor-HHS Appropriations measure has proven to
    be one of the most difficult funding bills to enact into law in recent
    years. For fiscal year 1997, the Labor-HHS measure was included in a
    Continuing Resolution. Up until the very end of September, federal
    employees at the agencies funded through this appropriations measure
    remained unsure as to whether or not they were facing another federal
    government shutdown. It has been estimated that during the 1995-1996
    shutdowns, 3.5 million hours of work was lost at HHS alone. The many
    programs administered by SSA and HHS have a wide impact on our nation's
    citizens. It is critical that adequate funding be provided and that
    funding be provided in as timely a manner as possible. That is NTEU's
    goal and it is the goal of the dedicated federal employees we represent
    at the Social Security Administration and Department of Health and
    Human Services as well.
         The President's fiscal year 1998 budget recommends an
    appropriation of $143.1 million for administration of HHS's
    Administration for Children and Families (ACF). This is the same as the
    fiscal year 1997 funding level. The ACF oversees an array of important
    federal initiatives including the successful Head Start program, child
    abuse prevention and treatment programs and a host of other critical
    child, youth and family programs. While we believe this division's
    workload demands at least the level of funding provided in the current
    fiscal year, it is critical that ACF funding levels not be reduced
    below current levels. Cuts in this agency's funding level in past years
    have hampered the employees' abilities to fulfill the agency's mission
    and I urge Congress to be mindful of the important role ACF plays as
    funding decisions are made.
        For the Administration on Aging (AOA), the President's budget
    requests a $37,000 increase in program administration funding. As the
    lead agency within HHS on aging issues, the recommended increase in
    appropriations is both reasonable and necessary. Adequate program
    administration funding is critical to insuring that AOA can effectively
    deliver the services it is charged with providing.
        Few agencies play a more pivotal role in Americans' daily lives
    than the Food and Drug Administration (FDA). Charged with protecting
    the health of the nation against impure and unsafe foods, drugs,
    cosmetics and other potential hazards, the President's budget request
    includes a $66 million increase in salary and expense accounts at the
    FDA. I would urge Congress to provide at least the level of funding
    prescribed in the President's budget for this critically important
    agency.
        For the equally important Health Resources and Services
    Administration (HRSA), the Administration budget recommends a decrease
    of almost $2 million below the fiscal year 1997 level. HRSA plays a
    central role in ensuring that quality health care is available to
    millions of Americans and I urge Congress to carefully review this
    agency's needs and appropriate sufficient funds to ensure that HRSA
    will be able to continue its important federal role.
        The mission of HHS's Office for Civil Rights (OCR) is to ensure
    that recipients of federal funding through HHS do not discriminate
    against program beneficiaries. OCR has an enormous responsibility, yet
    past appropriations levels have not kept pace with this division's
    workload and staffing requirements. I am pleased that the President's
    budget request includes a $1 million increase in funding above the 1997
    level. At a minimum, the Administration's budget request for OCR should
    be adopted.
        HHS's Program Support Center (PSC) first began operating during
    fiscal year 1996. This division was the outgrowth of departmental
    streamlining and efforts to combine similar operations. PSC provides a
    number of key functions including financial management and
    administrative operations for HHS. The President's budget request for
    PSC is the same as the fiscal year 1997 level. I would urge the
    Congress to, at a minimum, insure that funding does not drop below the
    1997 level.
        The Social Security Administration (SSA) continues to have two
    areas of concern with its disability system, Continuing Disability
    Reviews (CDR) and the backlog at the Office of Hearings and Appeals
    (OHA). NTEU believes that the current level of funding for the CDR
    program will permit significant progress to be made in that area.
    However, the OHA backlog problem continues because substantial funds
    are being expended in the Disability Process Redesign (DPR) toward the
    goal of decreasing the backlog, but without appreciable results. NTEU
    believes that SSA could make a significant reduction of that backlog
    with a much smaller expenditure by suspending or terminating the
    Adjudication Officer Initiative of the DPR and continuing the highly
    successful and relatively inexpensive Senior Attorney Program (also
    known as the Short Term Disability Project Action No. 7).
        The massive increase in the disability backlog that OHA experienced
    from 1992 to 1996 has been contained; there has been no significant
    change in the OHA backlog since July 1996. While no one at OHA is
    satisfied with the status quo, it is at last moving in the right
    direction. This stabilization of the backlog is due in great part to
    the Senior Attorney Program, which if continued, will permit a
    significant reduction in the case backlog, in processing times, and
    even in the reversal rate thereby providing greatly improved service to
    the public.
    Senior Attorney Program
        The Senior Attorney Program, also known as Short Term Disability
    Project Action No. 7, is a sharply focused plan with a well defined
    target, the disability backlog at the Social Security Administration's
    Office of Hearings and Appeals, which for the most part uses existing
    agency assets. This program does not require restructuring the Agency;
    a massive infusion of expensive technology; revising the decisional
    methodology; extensive employee dislocations; comprehensive, lengthy
    and expensive training of substantial numbers of employees; and nearly
    four years of planning without tangible results. In short, the Senior
    Attorney Program has been relatively inexpensive and very effective
    providing greatly improved service to the public primarily through
    redirecting current assets.
        Senior Attorneys spend approximately 25-50 percent of their time
    performing Action No.7 work and most of the remaining 50-75 percent of
    their time drafting ALJ decisions. The ability of Senior Attorneys to
    perform both tasks significantly increases managerial flexibility
    allowing human assets to be directed to the highest priority tasks
    thereby maximizing OHA productivity. Action No. 7 was hindered by a
    variety of ``start-up'' problems and fierce resistance from
    Administrative Law Judges, including many Hearing Office Chief
    Administrative Law Judges. Despite this resistance, nearly 47,000
    Action No. 7 decisions were produced in fiscal year 1996. However,
    recent management initiatives have significantly improved the
    operational efficiency of Action No. 7 resulting in a significant
    increase in production. During the first three calendar months of 1997
    nearly 16,000 Action No. 7 decisions were issued; this is an annual
    rate of over 62,000 cases. Quality Assurance studies have demonstrated
    that the accuracy rate of Senior Attorney decisions significantly
    exceeds that of Disability Process Redesign's Adjudication Officers and
    is somewhat higher than that of on-the-record ALJs decisions. The
    accuracy of the Senior Attorney decisions combined with the
    significantly lower payment rate of Senior Attorneys (approximately 22
    percent) than the payment rate of ALJs on the Senior Attorney cases
    that were not paid by Senior Attorneys (approximately 57.1 percent),
    demonstrate that Action No. 7 is not an effort to ``pay down the
    backlog''. During the course of the Senior Attorney Program, the
    overall payment rate at OHA has significantly declined thereby
    incurring a substantial savings in program costs. Additionally, the
    implementation of Action No. 7 has not resulted in an unacceptable
    increase in the number of ALJ decisions awaiting drafting. Action No. 7
    has resulted in deserving claimants receiving a favorable decision with
    an average processing time of approximately 120 days as compared to the
    over 1 year average processing time for a case requiring an ALJ
    hearing. Finally, Action No. 7 has caused a decrease of nearly a month
    and a half in processing time even for those Action No. 7 cases which
    were not paid by Senior Attorneys and which still required an ALJ
    hearing as compared with non-Action No. 7 cases.
    The Adjudication Officer Initiative of the Disability Process Redesign
        The primary Long-Term Initiative purporting to improve the OHA
    workload situation is the Redesigned Disability Process (DPR). However,
    at the outset of DPR, SSA admitted that it was not intended to deal
    with the two largest problems plaguing the Social Security disability
    system: The lack of an effective Continuing Disability Review (CDR) and
    the backlog at OHA. SSA subsequently claimed that one goal of the
    Adjudication Officer Initiative was to reduce the OHA backlog. The DPR
    consists of 83 separate initiatives of which GAO recently noted none
    had been completed. SSA is currently involved in an extensive review of
    its customer service program. To that end, a Customer Service Executive
    Team (CSET) has been charged with the responsibility of reviewing the
    current plan and suggesting improvements. In a meeting on April 16,
    1997 the CSET proposed that the Agency conduct focus groups and surveys
    of its ``disability customers'' to update its understanding of the
    service desired by these customers. At that time a senior SSA executive
    informed the CSET that such activities would make those managing the
    DPR uneasy if customers indicate desires not consistent with the
    Agency's current plans. This has heightened concerns the driving force
    behind the implementation of portions of the DPR, such as the AO
    initiative, is not improved service to the public, but advantage in the
    ongoing power struggle at the upper echelon of SSA management.
        The initiative that SSA indicates will provide relief to the
    workload situation of OHA is the Adjudication Officer (AO) Initiative
    which began testing in November 1995. Despite the highest level of
    priority, carefully selected personnel, a priority on data processing
    equipment, and the establishment of closely controlled, ideal test
    conditions, AO productivity remains at less than half the level
    predicted by the DPR model. SSA recently admitted that the DPR model
    upon which implementation of DPR is predicated is flawed. At the outset
    of the AO test SSA was so confident in the reliability of the model
    that it questioned the need for testing at all, and even when forced to
    conduct a test, publicly stated that the test was not a test of the
    concept, only a test of fine tuning of the implementation of the
    Program. SSA also stated that no decision had been made regarding
    implementation. Through February 21, 1997, despite the resources
    consumed, the AO test had produced only 5,689 decisions. Further, the
    quality of those decisions, based on Agency quality assurance
    evaluations, is less than that of similar ALJ and Senior Attorney
    decisions. By any objective measure, the AO test has been a nearly
    complete failure and demonstrates the inability of the AO concept to
    efficiently process disability appeals. The DPR, particularly the AO
    test, has had no measurable effect upon the workload of OHA except
    consuming resources, both human and material, that could have been put
    to much better use.
    Recommendations
        The Senior Attorney program has significantly reduced the delay in
    granting deserving disabled people their disability benefits,
    stabilized the OHA workload, and reduced the overall payment rate at
    OHA, thereby contributing to a savings in program costs with a
    relatively small outlay in funds. NTEU recommends that funding for this
    program continue.
        The Adjudication Officer Initiative of the Disability Process
    Redesign should be immediately suspended or terminated and at least
    some of the funds scheduled for that project should be redirected to
    effective efforts at reducing the OHA backlog.
        Thank you again for this opportunity to share our views concerning
    the fiscal year 1998 funding levels for SSA and HHS. The downsizing and
    budget cuts of recent years have taken their toll on the ability of the
    dedicated federal employees who work at these agencies to perform their
    jobs. I urge Congress to carefully review the needs of these agencies
    as work gets underway to establish funding levels for the coming fiscal
    year.

           LIST OF WITNESSES, COMMUNICATIONS, AND PREPARED STATEMENTS

                                  ----------
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    Ad Hoc Group for Medical Research Funding, prepared statement....   434
    Alden, Michael, Southwest Texas State University, prepared
      statement......................................................   358
    Alexander, Dr. Duane F., Director, National Institute of Child
      Health and Human Development, National Institutes of Health,
      Department of Health and Human Services........................   221
    Allen, W. Ron, president, National Congress of American Indians,
      prepared statement.............................................   341
    Alliance for Eye and Vision Research, prepared statement.........   518
    American Academy of Family Physicians, prepared statement........   569
    American Academy of Nurse Practitioners, prepared statement......   420
    American Academy of Pediatrics, prepared statement...............   478
    American Academy of Physician Assistants, prepared statement.....   546
    American Association of Blood Banks, prepared statement..........   531
    American Association of Colleges of Nursing, on behalf of the
      National Institute of Nursing Research, prepared statement.....   413
    American Association of Critical-Care Nurses, prepared statement.   522
    American Association of Dental Schools, prepared statement.......   628
    American Association of Nurse Anesthetists, prepared statement...   564
    American College of Cardiology, prepared statement...............   473
    American College of Preventive Medicine and the Association of
      Teachers of Preventive Medicine, prepared statement............   567
    American College of Rheumatology, prepared statement.............   503
    American Dental Association, prepared statement..................   424
    American Federation for Medical Research, prepared statement.....   366
    American Foundation for the Blind, prepared statement............
      651, 653.......................................................
    American Heart Association, prepared statement...................   387
    American Library Association, prepared statement.................   661
    American Nurses Association, prepared statement..................   587
    American Psychological Association, prepared statement...........   621
    American Public Power Association, prepared statement............   348
    American Social Health Association, prepared statement...........   560
    American Society for Microbiology, prepared statement............
      448, 485.......................................................
    American Society of Clinical Oncology, prepared statement........   447
    American Society of Clinical Pathologists, prepared statement....   582
    American Society of Tropical Medicine and Hygiene, prepared
      statement......................................................   524
    Anderson, Denise, on behalf of the CJ Foundation for SIDS,
      prepared statement.............................................   403
    Anderson, John, on behalf of the CJ Foundation for SIDS, prepared
      statement......................................................   403
    Arthritis Foundation, prepared statement.........................   506
    Association for Health Services Research, prepared statement.....   635
    Association of America's Public Television Stations, prepared
      statement......................................................   689
    Association of American Medical Colleges, prepared statement.....   500
    Association of Maternal and Child Health Programs, prepared
      statement......................................................   557
    Association of Outplacement Consulting Firms International
      [AOCFI], prepared statement....................................   333
    Association of Schools of Public Health, prepared statement......   572
    Atkinson, Wilveria B., Ph.D., on behalf of the Science and
      Technology Advisory Committee, prepared statement..............   638
    Autism Society of America, prepared statement....................   516

    Barnett, Alice, director, Health and Human Services, city of
      Newark, NJ, prepared statement.................................   604
    Batshaw, Mark L., M.D., on behalf of the Mental Retardation and
      Developmental Disabilities Research Centers, prepared statement   451
    Bond, Hon. Christopher S., U.S. Senator from Missouri:
        Prepared statements..........................................
          119, 167...................................................
        Questions submitted by.......................................
          72, 138....................................................
    Bosch, Erin, on behalf of the National Coalition for Heart and
      Stroke Research, prepared statement............................   428
    Boyd, Merle, acting principal chief, Sac and Fox Nation, prepared
      statement......................................................   364
    Brody, William R., president, Johns Hopkins University, prepared
      state- ment....................................................   468
    Brown, Lynne P., associate vice president for government and
      community relations, on behalf of New York University Center
      for Cognition, Learning, Emotion and Memory, prepared statement   643
    Bumpers, Hon. Dale, U.S. Senator from Arkansas...................
      33, 107........................................................
        Questions submitted by.......................................    78
    Bye, Dr. Raymond E., Jr., associate vice president for research,
      Florida State University, prepared statements..................
      411, 609.......................................................
    Byrd, Hon. Robert C., U.S. Senator from West Virginia............   115
        Questions submitted by.......................................
          83, 145, 270...............................................

    Calkins, Charles L., national executive secretary, Fleet Reserve
      Association, prepared statement................................   646
    Cassman, Dr. Marvin, Director, National Institute of General
      Medical Sciences, National Institutes of Health, Department of
      Health and Human Services......................................   165
    Cochran, Hon. Thad, U.S. Senator from Mississippi................
      70, 98, 167....................................................
        Prepared statement...........................................    87
    Coffey, Donald S., Ph.D., president, American Association for
      Cancer Research, prepared statement............................   460
    College on Problems of Drug Dependence, Inc., prepared statement.   507
    Collins, Dr. Francis, Director, National Human Genome Research
      Institute, National Institutes of Health, Department of Health
      and Human Services.............................................   196
        Prepared statement...........................................   197
    Consortium of Social Science Associations, prepared statement....   439
    Coonrod, Robert, Executive Vice President and Chief Operating
      Officer, Corporation for Public Broadcasting, prepared
      statement......................................................   312
    Council of State Administrators of Vocational Rehabilitation,
      prepared statement.............................................   639
    Craig, Hon. Larry, U.S. Senator from Idaho:
        Prepared statements..........................................
          104, 169...................................................
        Questions submitted by.......................................   141
    Cystic Fibrosis Foundation, prepared statement...................   386

    Demaret, Carol Ann, board member, Immune Deficiency Foundation,
      prepared statement.............................................   400
    Dew, Donald W., Ed.D., CRC, professor of counseling, George
      Washington University, on behalf of the National Council on
      Rehabilitation Education, prepared statement...................   640
    Dickey, Lori, on behalf of the Sudden Infant Death Syndrome
      Alliance, prepared statement...................................   403
    Drake, Lynn A., M.D., president-elect, American Academy of
      Dermatology, prepared statement................................   492

    Ellison, Sara S., director, community relations, Northeast
      Utilities System, prepared statement...........................   344
    Emmens, Matt, president, Astra Merck, prepared statement.........   465

    Faircloth, Hon. Lauch, U.S. Senator from North Carolina..........    25
        Questions submitted by.......................................    74
    Family Planning Coalition, prepared statement....................   550
    Fauci, Anthony S., M.D., Director, National Institute of Allergy
      and Infectious Diseases, National Institutes of Health,
      Department of Health and Human Services........................   229
        Prepared statement...........................................   231
    FDA-NIH Council, prepared statement..............................   509
    Fonseca, Raymond, dean and professor of Oral Maxofacial Surgery,
      University of Pennsylvania, School of Dental Medicine, prepared
      statement......................................................   385
    Foreman, Spencer, M.D., president, Montefiore Medical Center,
      prepared statement.............................................   579
    Fox, Claude Earl, III, M.D., M.P.H., acting administrator, Health
      Resources and Services Administration, Department of Health and
      Human Services.................................................   232
        Prepared statement...........................................   235
    Fred Hutchinson Cancer Research Center, prepared statement.......   458

    Geisel, Ritchie L., president, Recording for the Blind and
      Dyslexic, prepared statement...................................   429
    Gipp, David, president, United Tribes Technical College, prepared
      state- ment....................................................   656
    Gorden, Dr. Phillip, Director, National Institute of Diabetes and
      Digestive and Kidney Diseases, National Institutes of Health,
      Department of Health and Human Services........................   181
    Gordis, Dr. Enoch, Director, National Institute on Alcohol Abuse
      and Alcoholism, National Institutes of Health, Department of
      Health and Human Services:
        Biographical sketch..........................................   277
        Prepared statement...........................................   275
    Gorosh, Kathye, project director, the CORE Center, prepared
      statement......................................................   576
    Gorton, Hon. Slade, U.S. Senator from Washington, questions
      submitted by...................................................
      134, 269.......................................................
    Grady, Dr. Patricia, Director, National Institute of Nursing
      Research, National Institutes of Health, Department of Health
      and Human Services:
        Biographical sketch..........................................   280
        Prepared statement...........................................   278
    Greenberg, Warren, Ph.D., professor of health economics and of
      health sciences, Department of Health Services Management and
      Policy, George Washington University; and chairperson,
      Committee on Lobbying/Legislation, Mended Hearts, Inc.,
      prepared statement.............................................   471
    Gregg, Hon. Judd, U.S. Senator from New Hampshire................    36
    Guard, Roger, director, academic information technology and
      libraries, University of Cincinnati Medical Center, on behalf
      of the Medical Library Association and the Association of
      Academic Health Sciences Libraries, prepared statement.........   402
    Gumnit, Dr. Robert J., president, National Association of
      Epilepsy Centers, prepared statement...........................   416

    Hall, Dr. Zach, Director, National Institute of Neurological
      Disorders and Stroke, National Institutes of Health, Department
      of Health and Human Services...................................   188
        Prepared statement...........................................   189
    Harkin, Hon. Tom, U.S. Senator from Iowa.........................
      30, 227........................................................
        Prepared statement...........................................   101
    Health Professions and Nursing Education Coalition, prepared
      statement......................................................   433
    Herrera, Stanley, president, Alamo Navajo School Board, Inc.,
      prepared statement.............................................   476
    Hodes, Dr. Richard J., Director, National Institute on Aging,
      National Institutes of Health, Department of Health and Human
      Services.......................................................   187
    Hubbard, James B., director, National Economics Commission, the
      American Legion, prepared statement............................   336
    Humane Society of the United States, prepared statement..........   437
    Hutchison, Hon. Kay Bailey, U.S. Senator from Texas..............    23
    Hyman, Dr. Stephen, Director, National Institute on Mental
      Health, National Institutes of Health, Department of Health and
      Human Services.................................................   174
        Prepared statement...........................................   178

    In Defense of Animals, prepared statement........................   539
    Inouye, Hon. Daniel K., U.S. Senator from Hawaii, questions
      submitted by...................................................    75
    International Society for Technology in Education and the
      Consortium for School Networking, prepared statement...........   663

    Jaffe, David, the Jaffe Family Foundation, prepared statement....   537
    Janger, Stephen A., president, Close Up Foundation, prepared
      statement......................................................   682
    Johnson, David, Ph.D., executive director, Federation of
      Behavioral, Psychological and Cognitive Sciences, prepared
      statement......................................................   407
    Joint Council of Allergy, Asthma and Immunology, prepared
      statement......................................................   512
    Jollivette, Cyrus M., vice president for government relations,
      University of Miami, prepared statement........................   610

    Katz, Dr. Stephen, Director, National Institute of Arthritis and
      Musculoskeletal and Skin Diseases, National Institutes of
      Health, Department of Health and Human Services................   180
    Kemnitz, Joseph W., Ph.D., interim director, Wisconsin Regional
      Primate Research Center, University of Wisconsin--Madison,
      prepared statement.............................................   377
    Kemnitz, Joseph W., Ph.D., interim director, Wisconsin Regional
      Primate Research Center, prepared statement....................   470
    Kenney, K. Kimberly, executive director, CFIDS Association of
      America, prepared statement....................................   624
    Kirschstein, Dr. Ruth, Deputy Director, National Institutes of
      Health, Department of Health and Human Services, prepared
      statement......................................................   288
    Klausner, Dr. Richard, Director, National Cancer Institute,
      National Institutes of Health, Department of Health and Human
      Services.......................................................   165
    Klugman, Kate, on behalf of the National Coalition for Heart and
      Stroke Research, prepared statement............................   428
    Kohl, Hon. Herb, U.S. Senator from Wisconsin.....................    27
        Questions submitted by.......................................
          80, 143, 271...............................................
    Kupfer, Dr. Carl, Director, National Eye Institute, National
      Institutes of Health, Department of Health and Human Services..   184
        Prepared statement...........................................   184

    Langer, Amy S., executive director, NABCO, prepared statement....   437
    Larson, Dan, president and CEO, Polycystic Kidney Research
      Foundation, prepared statement.................................   379
    Lenfant, Dr. Claude, Director, National Heart, Lung, and Blood
      Institute, National Institutes of Health, Department of Health
      and Human Services.............................................   165
    Leon, Danyse, on behalf of the Circle of Care and AIDS Policy,
      for Children, Youth, and Families, Philadelphia, PA............   240
        Prepared statement...........................................   242
    Leshner, Dr. Alan I., Director, National Institute on Drug Abuse,
      National Institutes of Health, Department of Health and Human
      Services.......................................................   165
    Levine, Felice J., Ph.D., executive officer, American
      Sociological Association, prepared statement...................   528
    Lewis, Daniel, on behalf of the Dystonia Medical Research
      Foundation, prepared statement.................................   399
    Lewis, Rosalie, vice president of development, Dystonia Medical
      Research Foundation, prepared statement........................   399
    Lichtman, Marshall A., M.D., executive vice president for
      research and medical programs, Leukemia Society of America,
      Inc., prepared statement.......................................   534
    Lindberg, Dr. Donald, Director, National Library of Medicine,
      National Institutes of Health, Department of Health and Human
      Services.......................................................   285
    Lower, Dennis E., executive director, University Heights Science
      Park, Newark, NJ, prepared statement...........................   600
    Luke, Robert G., M.D., president, American Society of Nephrology,
      prepared statement.............................................   374
    Lupus Foundation of America, prepared statement..................   409

    Marcus, Dr. Ann, dean, School of Education, New York University,
      prepared statement.............................................   644
    Mason, Russell, chairman, United Tribes Technical College,
      prepared statement.............................................   656
    Mauderly, Joe L., senior scientist and director of external
      affairs, Lovelace Respiratory Research Institute, prepared
      statement......................................................   614
    McLeod, Renee, MSN, RN, CS, CPNP, president, National Association
      of Pediatric Nurse Associates and Practioners, Inc., prepared
      statement......................................................   421
    McSteen, Martha, president, National Committee to Preserve Social
      Security and Medicare, prepared statement......................   687
    Mead, Dr. Rodney, professor of zoology, director of NIH IDeA
      Program, University of Idaho, prepared statement...............   391
    Miller, Hon. Bob, Governor, State of Nevada, Carson City, NV.....   147
        Prepared statement...........................................   150
    Molloy, Russ, Esq., director of government relations, University
      of Medicine and Dentistry of New Jersey, prepared statement....   596
    Murray, Hon. Patty, U.S. Senator from Washington.................    21
    Murstein, Denis, administrative director, Illinois Collaboration
      on Youth, prepared statement...................................   360
    Myers, Terry-Jo, Interstitial Cystits Association, prepared
      statement......................................................   549

    National Aging and Vision Network, prepared statement............   641
    National Alopecia Areata Foundation and the Coalition of Patient
      Advocates for Skin Disease Research, prepared statement........   527
    National Association of AIDS Education and Training Centers,
      prepared statement.............................................   574
    National Association of Anorexia Nervosa and Associated
      Disorders, prepared statement..................................   497
    National Association of Community Health Centers, prepared
      statement......................................................   561
    National Coalition for Cancer Research, prepared statement.......   455
    National Coalition for Promoting Physical Activity, prepared
      statement......................................................   594
    National Depressive and Manic-Depressive Association, prepared
      statement......................................................   521
    National Energy Assistance Directors' Association, prepared
      statement......................................................   583
    National Federation of Community Broadcasters, prepared statement   686
    National Hemophilia Foundation, prepared statement...............   633
    National Indian Education Association, prepared statement........   669
    National Indian Impacted Schools Association, prepared statement.   659
    National Job Corps Coalition, prepared statement.................   338
    National Minority Public Broadcasting Consortia, prepared
      statement......................................................   489
    National School Boards Association, prepared statement...........   665
    Network of University Affiliated Programs, prepared statement....   361
    New York University Medical Center, prepared statement...........   382
    Newhouse, Joseph P., Ph.D., Chairman, Prospective Payment
      Assessment Commission, prepared statement......................   291
    Norton, Nancy, chairman, the Digestive Disease National
      Coalition, prepared statement..................................   397

    Olden, Dr. Kenneth, Director, National Institute of Environmental
      Health Sciences, National Institutes of Health, Department of
      Health and Human Services......................................   165
    Organizations of Academic Family Medicine, prepared statement....   617

    Paul, Dr. William, Director, Office of AIDS Research, National
      Institutes of Health, Department of Health and Human Services..   192
        Prepared statement...........................................   193
    Pennsylvania Electric Association, prepared statement............   352
    Perry, Dr. Bruce, professor of child psychiatry and vice chairman
      for research, Department of Psychiatry, Baylor School of
      Medicine, Houston, TX..........................................   156
    Philips, Barbara, M.D., chairperson, government affairs and
      public policy, American Sleep Disorders Association, prepared
      statement......................................................   395
    Pings, Cornelius J., president, Association of American
      Universities, prepared statement...............................   679
    Portrait of a Silent Killer, prepared statement..................   380
    Public Policy Council, on behalf of the Society for Pediatric
      Research, the American Pediatric Society, and the Association
      of Medical School Pediatric Department Chairmen, prepared
      statement......................................................   417

    Recording for the Blind and Dyslexic, prepared statement.........   430
    Reid, Hon. Harry, U.S. Senator from Nevada.......................   111
    Reiner, Robert, Castle Rock Entertainment, Beverly Hills, CA.....   157
        Prepared statement...........................................   159
    Research Society on Alcoholism, prepared statement...............   514
    Richter, Mary Kaye, National Foundation for Ectodermal
      Dysplasias, prepared statement.................................   535
    Rider, J. Alfred, M.D., Ph.D., president, Children's Brain
      Diseases Foundation, prepared statement........................   526
    Riley, Hon. Richard, Secretary of Education, Office of the
      Secretary of Education, Department of Education................    85
        Prepared statement...........................................    92
    Robb, Lynda Johnson, chairman of the board, Reading Is
      Fundamental, Inc., prepared statement..........................   676
    Rosenthal, Suzanne, president emeritus, the Digestive Disease
      National Coalition, prepared statement.........................   397
    Rotary International, prepared statement.........................   443

    Saylor, Annie V., Ph.D., president, National Alliance for the
      Mentally Ill, prepared statement...............................   453
    Schambra, Dr. Philip, Director, John E. Fogarty International
      Center for Advanced Study in the Health Sciences, Department of
      Health and Human Services, prepared statement..................   283
    Schwartz, Peter E., M.D., president, Society of Gynecologic
      Oncologists, prepared statement................................   368
    Shalala, Hon. Donna E., Secretary of Health and Human Services,
      Office of the Secretary, Department of Health and Human
      Services.......................................................     1
        Prepared statement...........................................     8
    Skelly, Thomas P., Director, Budget Service, Department of
      Education......................................................    85
    Slavkin, Dr. Harold, Director, National Institute of Dental
      Research, National Institutes of Health, Department of Health
      and Human Services.............................................   165
    Snow, Dr. James B., Jr., Director, National Institute on Deafness
      and Other Communication Disorders, National Institutes of
      Health, Department of Health and Human Services................   165
    Society of Toxicology, prepared statement........................   383
    Solomon, Dr. Richard H., President, United States Institute of
      Peace, prepared statement......................................   300
    Specter, Hon. Arlen, U.S. Senator from Pennsylvania, prepared
      statements.....................................................
      2, 86, 166.....................................................
    Stevens, Christine, secretary, Society for Animal Protective
      Legislation, prepared statement................................   376
    Stubbs, Anne D., executive director, Coalition of Northeastern
      Governors, prepared statement..................................   357
    Suttie, John W., Ph.D., president, Federation of American
      Societies for Experimental Biology, prepared statement.........   431

    Terry, Sharon, president, PXE International, Inc., prepared
      statement......................................................   446
    Thompson, F.E., Jr., M.D., M.P.H., State health officer,
      Mississippi State Department of Health.........................   237
        Prepared statement...........................................   239
    Thorson, Kristin, president, Fibromyalgia Network; and president,
      American Fibromyalgia Syndrome Association, prepared statement.   482
    Tobias, Robert M., national president, National Treasury
      Employees Union, prepared statement............................   692
    Tri-Council for Nursing, prepared statement......................   591
    Tuckson, Reed V., M.D., president, Charles R. Drew University, on
      behalf of the Association of Minority Health Professions
      Schools, prepared statement....................................   393

    United Distribution Companies [UDC], prepared statement..........   352
    United Ostomy Association, prepared statement....................   545
    United States Catholic Conference, prepared statement............   667

    Vaitukaitis, Dr. Judith, Director, National Center for Research
      Resources, National Institutes of Health, Department of Health
      and Human Services, prepared statement.........................   281
    Varmus, Dr. Harold, Director, National Institutes of Health,
      Department of Health and Human Services........................   169
        Prepared statement...........................................   172
    Visco, Frances M., president, National Breast Cancer Coalition,
      prepared statement.............................................   371
    Voinovich, Hon. George, Governor, State of Ohio, Columbus, OH....   152
        Prepared statement...........................................   154

    Walgren, Kathleen, chairperson, National Fuel Funds Network,
      prepared statement.............................................   349
    Waters, Patrick, president, Montgomery County Stroke Club, Inc.,
      prepared statement.............................................   472
    Weinstein, Michael, president, L.A. AIDS Healthcare Foundation,
      prepared statement.............................................   606
    Wells, John Calhoun, Director, Federal Mediation and Conciliation
      Service, prepared statement....................................   323
    White, David, M.D., president, government affairs and public
      policy, American Sleep Disorders Association, prepared
      statement......................................................   395
    Wilensky, Gail R., Chair, Physician Payment Review Commission,
      prepared statement.............................................   294
    Williams, Dennis P., Deputy Assistant Secretary for Budget,
      Department of Health and Human Services........................   165
    Williams, Kim, on behalf of the board of directors for the South
      Mississippi AIDS Task Force, Biloxi, MS........................   243
    Wilson, Robert, the Wilson Foundation, prepared statement........   466

    Young, Robert C., M.D., president, Fox Chase Cancer Center,
      prepared statement.............................................   427

    Zingale, Daniel, executive director, AIDS Action Council,
      prepared state- ment...........................................   552
    Zitnay, George A., Ph.D., president and CEO, Brain Injury
      Association, Inc., prepared statement..........................   585

                                 SUBJECT INDEX

                                  ----------

                            DEPARTMENT OF EDUCATION
                      Office of the Secretary of Education

                                                                       Page
    Additional committee questions...................................   120
    America Reads Challenge..........................................
      89, 108........................................................
        And NICHD research results...................................    99
    Applying special education intervention techniques to reading....   103
    Budget request, fiscal year, Department of Education.............    88
    Carnegie Foundation task force on young children.................    88
    Charter schools..................................................    90
    Child care tax credit for private sector, proposed...............   111
    Early child development research findings........................    96
    Early childhood education:
        For children aged 0 to 3 years...............................   111
        Importance of................................................   101
    Education:
        Importance of family involvement in early....................   104
        Tax proposals................................................   109
    Educational:.....................................................
        Program increases............................................   106
        Tax proposals................................................   109
        Technology...................................................   113
            And innovation...........................................    90
    Eisenhower.......................................................   114
    Federal:
        Funding of higher versus elementary education................   105
        Pell Grant Program...........................................    91
        Programs funding early childhood education...................   112
        Role in early childhood education............................   103
        Student aid approach.........................................    99
    Goals 2000.......................................................   152
        Raising educational standards................................    88
    Good health care.................................................   160
    Impact aid.......................................................   107
        Proposed cut in funding......................................   105
    Increase in tuition versus median income.........................    99
    International testing, comparative standing in...................   116
    Merit aid--rewarding academic excellence.........................   118
    National Voluntary Testing Program...............................    90
    National writing project and teacher training....................   100
    New budget initiatives...........................................    88
    Pell grant proposals.............................................   109
    Postsecondary tax proposals......................................    91
    Prepaid tuition plans--one answer to rising cost.................    98
    Progress of education in the United States.......................   115
    Proposed innovative child care block grant.......................   112
    Public school's use of parochial school's facilities.............    97
    Raising standards and academic excellence........................   116
    Reading skills, increases for programs that develop..............    89
    Scholarships, Bryd honor.........................................   117
    School:
        Based health clinics.........................................   110
        Construction initiative......................................    90
    Special education--early intervention programs...................   102
    Star Schools Program, proposed cut in............................   106
    Tax initiatives..................................................    97
    Teachers:
        Professional development.....................................   108
        Technology training for......................................   113
    Teaching standards, professional development and.................    90
    Title I..........................................................    89
    Training of America Reads tutor..................................   114
    Tuition plan, Mississippi's prepaid..............................    99

                    DEPARTMENT OF HEALTH AND HUMAN SERVICES
                         National Institutes of Health

    Additional committee questions...................................   250
    Budget:
        Increase.....................................................   171
        Request......................................................   171
    Clinical research................................................
      219, 223.......................................................
    Cloning research restrictions....................................   228
    Drug therapy funding shortage....................................   246
    Genes, understanding diseases through............................   170
    Grant awards to all States.......................................   222
    National Cancer Institute, issues for the........................   199
    Medicaid policy on medication....................................   246
    Molecular information, use of....................................   170
    National Academy of Sciences report on resource allocation.......   183
    New AIDS drug therapies..........................................   245
    Reading development and disorders................................   220
    Sarcoidosis......................................................   182
    Techniques, noninvasive imaging..................................   170

                            Office of the Secretary

    Additional committee questions...................................    48
    Abstention programs..............................................    43
    Benefits and risks...............................................    24
    Breast cancer action plan........................................    40
    Budget:
        FDA..........................................................    38
        NIH..........................................................    30
        Tough........................................................     8
    Cap:
        Non-Medicaid.................................................    35
        State flexibility under the..................................    37
    CDC screening program............................................    24
    Child:
        Care workers, training for...................................    28
        Support......................................................    29
    Children, uninsured..............................................    21
    Children's health
        Care.........................................................     4
        Initiative...................................................    34
    Cloning..........................................................    41
    Disproportionate share:
        Funds........................................................    22
        Hospitals....................................................    45
    DSH payment......................................................    36
    Head Start.......................................................
      5, 30..........................................................
    Immigrants.......................................................    27
    Loses from fraud and:
        Abuse........................................................    26
        Waste........................................................    46
    Mammograms.......................................................    16
        NCI guidelines for...........................................    23
    Marijuana use for medicinal purposes.............................    41
    Medicaid:
        Per capita cap on............................................    34
        Savings......................................................    33
    Medical research.................................................     7
    Medicare:
        And medical changes..........................................     3
        Modernizing..................................................     4
        Reimbursements for speciality providers......................    39
        Savings......................................................    25
        Surgeons and.................................................    47
    Needle exchange program..........................................    42
    New adoption initiatives.........................................     5
    New innovative programs..........................................    21
    NIH Director's discretionary fund................................    32
    Office of Alternative Medicine...................................    31
    Oxygen...........................................................    31
    Public health agenda.............................................     7
    Tax credit for child day care....................................    28
    Teaching hospitals...............................................    44
    Teenage:
        Drug use.....................................................     6
        Pregnancies..................................................     6
        Tobacco use..................................................     6
    Waste, fraud, and abuse..........................................    31
    Welfare:
        Reform.......................................................     5
        Spending on noncitizens......................................    26