[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
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___________________________________________________________________________
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                      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.
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    \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.
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    \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.
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    \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.
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    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.
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            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\
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    \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.
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    \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.
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               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
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           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\
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    \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

                              ----------                              
                                                                   Page
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